Beach day

Sunday morning we went to the golf driving range where I videotaped Ferit who is trying to improve his swing. Then I sat on a benchand read a magazine enjoying the quiet/busy atmosphere of the golf course, it somehow reminded me of a ski resort, don't know why.

All week I had an intense desire to go to the beach, checked the weather report and headed off to Cocoa beach with Ferit,Elif and Gina(Elif's friend) after dropping my car to the service. Not my favorite one but the closest that would let me breathe sea and feel sand.

Turned out to be a perfect day and for the first time I went commando, it was just too hot and I did not have a solution for swimming. Implemented my 'whatever' motto.

The water was a bit refreshing but felt perfect.

First of : hair(fuzz) trim, PS visit, Oncologist visit

The Plastic surgeon visit was as I expected, the band that was there with the expander was still there with the implant pushing it up making that side tight/uncomfortable and uneven. He said that he did not see anything when he went in for the exchange and he would do a corrective action (that needed to be done to complete the reconstruction) 5-6 weeks after radiation.
Overall the reconstruction turned out ok(I will give it a 6 out of 10 in its current state and if the band is fixed later might bump the grade up to maybe a 7+ not more) My Plastic surgeon did not use the brand that I heard that was really good (Mentor) but used another one. Still can not complain that much, I just am not as comfortable as I thought I would be.

After looking in the mirror and getting annoyed with the baby fuzz(I have heard some bc gals actually savoring the little duck hair but I certainly am not one of them) asked Ferit to buzz it off, not a complete shave, but as much needed to get rid of the baby feather and leave hair stubs. It certainly looks a lot better/healthier.
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The oncologist said 'hmmm what are you doing here I was expecting you after radiation ?' They took blood (ouch since I had my port out they had to do it the regular way) and sent me off asking me to come back in 12 weeks. When I asked whether any scans will be performed to monitor, he said if he wanted he could do a 'panic' scan, but from what I am reading there is actually not that much point in doing any blood/scan monitoring unless there are physical symptoms. They needlessly panic the patient because they could give signs that are totally unrelated to the bc. My tumor markers have been going all around the place which I was told was normal when one is going through chemo and were not necessarily an indication of anything going wrong.
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Another lesson for me to let go I guess.
My attitude going forwards will be 'Whatever' and move on.
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He also shot down any hopes of natural remedies for the hot flashes that wake me up every night 5-6 times.
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I know that if I go on Effexor an antidepressant that would take care of the hotflashes but I do not want to take medication, will try to see whether I can somehow manage through them.
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Focusing at work is getting to be challenging, interesting because I thought that as I neared the end of treatment I would feel more comfortable relaxed, not being monitored carefully is making me feel like walking on a tight rope with no safety net
urghh...
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Friday night went out to celebrate N's birthday and went to Luma on the Park, had a great time, although it is getting challenging to find clothes that I can squeeze myself into something has to be done re: this weight gain. And wearing a wig is getting really old, can't wait till I have a boy cut lenght hair.
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Saturday went to the Kundalini Yoga that I have not attended for awhile, it was a perfect day. The studio is overlooking a garden with large trees, it was raining outside.
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I am looking into supplementing my treatment with Dr. Richard Schulze's system, but it seems a bit intense might tone it down a bit and implement some parts if I can.
There is also Johanna Budwig's flaxseed oil and cottage cheese regimen which I am debating on, as flaxseed supplements are a controvertial topic for hormone positive bc's. Found a reputable research that was stating that flaxseed indeed resulted in tumor shrinking, but the study was done with about 40 gals I think.
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As our wedding anniversary present we ordered ourself a Juicer (omega 8005) will also change my nutrition to include those regimens.

Can I color my hair ehem fuzz yet ?

It has been about 5 weeks since my last chemo and the fuzz is growing pretty fast but it is almost all white. The wig/bandanna look is getting kind of old and the weather is warming up, so I thought that if I colored my fuzz maybe I might be able to go commando ?? Ferit as usual very politely said ' I do not think so' but I decided to try it out and applied mascara to one half of my head.. urghh.. as always he was right, I do look like I have mange not enough follicles yet. Gotta double up the Nioxin Follicle booster.
Elif said that I looked like her favorite black and white cookies that we buy from Too Jays, in any case seems like I will be fancying head covers for a little bit more.
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My favorite pictures

Pictures from the Race

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Race Day National Breast Cancer Marathon, 26.2 with Donna

Ferit was trying to wake me up gently, however I was enjoying my precious sleep and did not have any intention to get up until one of my 2 alarms went off, then at 5:45 did not have any excuse to linger in bed longer when my phone alarm went off. I am losing my touch as an early morning bird for sure.

Met with the crew for breakfast at 6 am, we had gotten mixed messages regarding the weather stats today, initially it was thought to be cool (it was supposed to be starting at lower 50's only to warm up to mid 60's by noon)however my friend Mary Ann had called and warned me that the forecast had actually changed and it was going to be unseasonably warm, close to record heat.(about 80).Except Sibel and her friends everyone else was wearing long pants and settled on short sleeves(which was extremely wise) Teenagers certainly have an invincibility regarding sleep deprivation and heat/cold.

Drove to the Morocco Shrine where the shuttles were going to take us to the race start. I believe we waited close to an hour and was able to get into the 9th bus that came and was at the race site around 7:45 lingered a bit and then headed to the start area.

One of the local news crews interviewed Sibel and me, caught me off guard and I said pretty stupid stuff which I later thought was pretty much off base oh well.. luckily I am not making my living by talking live on the air ! I thought I sounded a bit too arrogant, actually taking credit for others accomplishments.
It can be viewed from :

http://wm.wtlv.gannett.edgestreams.net/news/2008-02-17/grayson6pm.wmv

Since I had a race number I was able to go to the start line with the racers(if only they looked at my shoes they would have definitely figured out that I was in no way competing), hoping to be able to see Mary Ann and maybe walk/jog the first mile with her. However despite all the hollering of the 6:30 marathon race group members we could not locate her (later I learned that she actually had started out with the 4:30race group and let the 6:30 catch up with her). The horn went off and the racers started to move as a single body, I actually had a hard time getting out to the side after walking with them for a couple of hundred yards, it was kind of tempting to try hooking up with them for a couple of miles after all I had trained throughout chemo for this event.. but I knew better 3 days after surgery. Good thing I had not worn my running shoes (knowing myself I did not even bring them to Jacksonville)

Met with bil who had driven there and parked at a nursing home's parking lot to drive to the beach area close to the half marathon turnaround to 6th avenue so we could cheer our crew which would be running on the beach and then also coming back inland. I was trying to shop for Marathon souveniers for the first timers,we stopped for Starbucks and also we were not able to find a safe parking place(ended up parking in a non-parking but safe spot) so we missed the a couple of our runners. But I was able to see Mary Ann and give her a hug ! I do not even recall the last time I saw her.

Of course the plan of snoozing on the beach with my book which I was looking forward to while everyone was running did not happen.

Then we went back to the finish line to greet the runners. By this time it had gotten really warm and I was getting worried about everyone when I heard sirens I was worrying that someone got dehydrated and had to be picked up spectating seems to be really hard.

One by one each showed up pretty exhausted but everyone also had a huge smile, and a story to tell. There were 7 first timers in the crew of 8 and everyone met or exceeded their pre-race goals which was impressive because the course was harder than what they had trained for and the weather conditions were not optimal( high humidity starting at 99% then dropping to 70%, temperature close to 80)Carolina actually pulled a 2:07 !!! her hard training had definitely paid off what a performance on a first half marathon !

I tried to find Jan my friend from work but could not spot her, later when i looked at the results I saw that she must have passed right in front of me at the finish line but I did not see her.

Waiting at the finish line feeling a bit tired(I think I had walked about 2 miles back and forth that day) I sat down on the curb and Sibel came and sat with me, she literally had salt cakes on her eyelids !

Later as I was watching the runners come in I thought how exhausted they looked and how much energy they had spent during the last 2-3 hours, then I thought that all this energy was intended to be directed towards the fight against bc. I almost felt all this energy radiate from the finish line and thought that I was lucky that I was close to it and was able to feel it firsthand.

Went into the Racers Village with the last runner of our crew and since I was holding my race number in my hand they gave me a finishers medal,I rejected the first one, but then it was hard to resist taking the second one(it is beautifully designed and has a suncatcher in the middle). Thought that I would decide on what to do with it later.

Did not lollye around in the Racer Village and headed off to the hotel to clean up and head out of the endorphin filled world of post-race-high to our normal lives. War stories were exchanged in the cars and I am suspecting will be part of the runners conversations for some time coming.

Stopped at Panera, picked up some pick-me-up Java from Starbucks and headed back home trying to beat the post-Nascar/Daytona traffic.

It is quite entertaining to watch people try to get out of a car after sitting in it for 2.5 hours following running a half marathon. The nursing home patients of the facility that we parked in front of probably looked like olympians compared to them ! If they are like me tomorrow might be more painful for them unfortunately.

Told Ferit that we had to do such an out of town event(not necessarily a race but some kind of activity ) once a month. He gave me a funny look, I bet he was thinking about a golf getaway.

Back to normal life tomorrow is a work day, how is one to appreciate vacations/short getaways if not experiencing the frustration of ones daily lives burdens. ( yeah.. I will keep on repeating this to myself while working tomorrow maybe I actually MIGHT believe it ! )

Saturday going to Jacksonville,26.2 Run with Donna Breast Cancer Marathon

Saturday morning I felt a lot better and my mood improved, maybe there was hope that I would actually go and breathe the air of the half marathon and support my friends and family who were participating in the event.

Before we left the house we noticed that I had not registered Ferit or Sibel yet, ooppss. The last couple of weeks had been such a turmoil that I had left the registration to the last moment and then totally forgot about it. My friend Mary Ann who was also doing the event had called and told us that there still was onsite registration. A major crisis was avoided. Can you imagine that after training for a half marathon logging those grueling miles you are told that the race was closed and because someone forgot to register you, you could not race ?

We left towards noon and picked up Z and P and arrived at the expo which was held at the Morocco Shrine at Jacksonville around 2 pm without getting lost (oh yeah we had a gps and mapquest directions.. but leave it up to me and I go in circles within 1 miles to my destination- I was the copilot responsible for naviation so there was ww3 in the car of course ) My daughter Sibel was driving from Gainsville with 3 of her friends. We met there with them and my sil and bil. The expo was nice but I somehow was expecting a lot more vendors, I picked up a pink ribbon bumper decal saying 'cancer sucks' and a pair of running glasses.. The race shirts were technical long sleeved, very cool !

We also got a lot of other goodies, the book written by Donna Hicken(who is the organizer of this race) The Good Fight, which was about her second bout with Breast Cancer., and the most delicious brownie that I ever tasted !!! Butters Brownies !! www.buttersbrownies.com I think those brownies started their lives as fudges but at the last minute decided to be brownies, but did not quite succeed ! I would not suggest looking at the nutrition facts though.

Went to the hotel to check in and then went to drive the race course, there were 2 climbs(overpasses) and then just before the 1/2 marathon turnaround the run was on sand which seemed pretty hard packed.

Was delayed to get to a restaurant we were not even able to reach the hostess table to ask the wait time at Carabbas, just as we were getting desperate we spotted Sweet Tomatoes and had our dinner there.

Went back to the hotel and I tried to give some tips/advise to the first timers. chatted a bit then went to bed around 11. Took 2 benadryls to knock me out I definitely was feeling better by now and pumped up and ready to support the crew the next morning !

Friday I was cuddled with TLC by my friends

My body had a hard time shaking off the drugs that they used this time to knock me out. I had constant shivers and nausea that came in waves. I tried to flush it all out of my system by hydrating with water and tea.

I will contact the hospital next week and ask them to provide me with the drugs and dosages used in each of my operations, I am almost sure that something different had been used the last time or the dosage was a lot higher. The other option would be that since I had finished chemo recently my body had a lot harder time to flush it out.

Zeren came early in the morning to keep me company and brought an awesome homemade lentil soup, we brewed tea the old fashioned way with a double boiler and chatted along, towards noon I started feeling ill again and took my comfort corner on the loveseat covered by my quilt that my mom made from my race tshirts. Watched the Movie 'Sun Also Rises' on tv and dozed for a while. I ran a slight fever which worried me because I am not quite sure of how my white blood cell counts are after the chemo, I definitely did not want to risk getting an infection that would delay radiation.

Around 3 o'clock N brought all the ingredients to make her infamous scones along with a wonderful bouquet of yellow roses; hearing this of course, P and S also stopped by. I was still on the couch not feeling that well and was watching the parody in the kitchen during the scone assemblies which was a combination of food network,golden girls, sex and the city and desperate housewives (no offense ok !! ) I felt cocooned by the tlc that these gals were showing me, and the enormous sense of gratitude for having them in my life swept over me like it did so many times this past 6 months.

They stayed until the evening, we took advantage of the beautiful weather and sat on the porch enjoying the olive, cheese and apple scones along with freshly brewed tea. Although probably having friends over did tire me it also gave me an immense amount of recharge that overcompensated and made me feel really good. I felt myself slowly bouncing back.

That evening I still was not sure that going to Jacksonville the next day would be a start move. As far as I knew all my symptoms seemed to be stemming from the anastesia drugs used, so decided to tell Ferit that we were still going. I did not have any pain related to the surgery, just felt tight across my chest.

I know that several people thought that me going to Jacksonville to spectator a half marathon 2 days after surgery was not a wise move. I would have thought the same way if I were them. But this race meant a lot to me was counting on my body not to betray me and bounce back Saturday. And I was positive that I would be really frustrated if I did not go and stayed cooped up at home.

Took a Tylenol PM and was able to sleep for about 4-5 hours that night until 4 am.

Exchange Surgery Day

Woke up around 7 am and realized that I had waaayyy too much time on my hands since I could not plan on what TO eat, plan on what NOT to eat, worry about what WOULD I eat. Could not work out either since I was supposed to fast until surgery.
I also wanted to get some housework done so I would be able to recover and not do too much in the next couple of days.

So did laundry, dishes, tidied kitchen,fridge,did a quickie pantry makeover, cooked soup(whenever the temperature goes below 50 I cook soup) did a pile attack(all the paperwork that accumulates unless I hit it diligently every day). By the time Ferit came to pick me up to leave at 11:30 I was still in the shower.

I wore the beautiful BC scarf that Erin my friend from work had given me since it was Valentines day I proceeded with wearing a pink sweater too. The only pants I can fit(if you do not count the stretch jeans which if absolutely necessary I basically squeeze myself into leaving minimal amout to breathe( in are my blackstretchy yoga pants so that makes getting dressed fairly easy.

We were a bit late and on our way there received a call from the Hospital (Ehmm.. Ms Arditi you are scheduled for surgery ?) Oh well, I always have to wait for them, and I was positive that today I would be waiting for them a lot at one point.

Told Ferit that I would like to stop by Einstein Bagels on our way back from surgery to grab a bit.

I am going public with the following phat picture ! That should give me some motivation NOT to chomp down everything that is not moving.

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Checked in the Admissions and was rushed off to Surgery Waiting Room, without even having time to settle into a chair I was rushed off to Surgery Prepping room by myself. I was given the usual gown (that opens in the back I really do not know why these gowns open in the back whereas all the time the nurses have to fumble through the front to get electrodes in.. etc.. no one is usually interested in the back/butt so why are they left open ?)

This gown though had a cool feature it had a large hose attached which blew hot air to keep me warm I had this before and I really liked it. Got some cute hospital socks too, along with funny white compression stockings which have holes on the bottom ??

Since my port was getting removed they had to put an iv on my arm, the tech that initially came first wanted to Lidocaine the area before sticking the needle and I was like ' hey why will you be pinching me twice ? just get going forget about the lidocaine' -- I do not like lidocaine the couple of times I put it on at the dentists office it made me even more sensitive feeling like frost bite.
He proceeded with trying to find a vein in my hand.. twisting the needle in ok I am very patient and have a high pain tolerance but guess I must have sighed with frustration. Then he gave up on that one and applied a tournique to my upper arm and tried to find a vein there. Again no luck, at this point I must have shown my thoughts like ' Ok dude if you do not know what the.. you are doing get someone who does in here asap' and he said that he would find someone who was really good at finding veins. Smart move on his part, he swerved a beatchh attack which was coming at him.

The 'vein guru' came and she stuck me with a needle in a second saying ' this should do it' I was very tempted to say not to let that other guy near the patients but decided to shut up since I would be unconscious pretty soon and did not want anyone having any ill feelings towards me.

On my right arm which I had 6 nodes removed, they wrote with permanent markers No Blood Pressure/ No IV since I would not be awake to defend myself.




There was a problem about the consent not including the port removal so we had to go through the paperwork again. The anasthesiologist came and was a very scary looking guy !! Then the anasthesiologists nurse came, then Dr. Pope's nurse Debbie came oh and there was also NP Kim who was prepping me along with some other nurses which I do not recall, I answered the same questions over and over again. Did I have anything to eat/drink after midnight-NO, ( I am not going to tell the little snack I had at 1:30 am ), did I take any meds today - NO, was I allergice to any meds -NO, did I have reaction to anasthesia last time - NO. What was my birthdate, what procedure was I having done today .. blah blah... I know these are to protect the patients.

They allowed Ferit to come and visit for a couple of minutes and he was ushered out.

I was looking forward to getting knocked out by Valium presurgery but they could not do it until Dr. Pope came and marked me. That happened at 2:15 he was running late, he made several marks on me to determine where the expanders are I asked him again about Jacksonville trip this weekend he said that as long as I kept the body temperature down and did not exhaust myself I should be fine. Yey!!!

Then they gave me the Valium and wheeled the bed into the surgery room. They placed me on a very narrow table which had 2 narrow extensions for the arms to be stretched out,they tied my arms there, I basically was in a position to be crucified were my last thoughts just after I saw the scary anesthesiologist talk to me.

I woke up at 4:30 shivering like crazy and a nurse was sitting with me, I felt sooo cold. I asked whether it was normal she said yes. This had never happened before in my previous surgeries. I was feeling kind of sick in my stomach too, and my throat was very sore from something that they must have stuck down. Asked for ice chips since my mouth felt like parchment. I did not feel any pain but asked for pain meds anyways and as soon as the nurse injected it into my iv my shivering stopped.
I certainly was feeling worse than I had felt after my mastectomy which was interesting this time the anesthetic drugs just did not agree with me, I did not have any pain in my surgery site.

Around 5:00 they brought Ferit in and wheeled me to another discharge room where the nurses dressed me in the bed and I was transferred to a recliner. I was really dizzy and hardly walked from the bed to the recliner, it is amazing how quick they try to get rid of patients, I think I was one of the last ones there and they were closing shop. One of the nurses did a scarf design which I really did not like but was too tired to do it myself and I did not want to hurt her feelings.

And I got an awesome Valentines day present from Ferit ! A Beautiful Valentine's day card and the printout of a Sales order for a pillow that I have been wanting to buy for about a year ! The Sofitel pillow ! Can not wait until it comes.

After going over post-surgery details with Ferit I was wheeled to the discharge area where Ferit picked me.

After about 10 minutes in the car I really got sick and luckily they had given me the little bowl where I was able to relieve myself,so thats why they do not want one to eat. This was the first time that I got sick after getting anaestesia, I think it is because my body has really not recovered from chemo and the balances are still fragile. Even the idea of food made me sick so of course there was no stopping at Einsteins.

After getting home cooked a chicken noodle soup and ate it with lots of lemon juice, that felt semi-good and I was able to take half a pain killer ( I did not have pain) that I was hoping would ease my uptight state. Hydrocodone immediately relaxed me and I was able to veg in front of the tv dozing on and off wathcing Lost.Ferit prepared me some feta cheese and muffins/tomatoes,olives, my stomach is still not ok but kept them down. Around 10 o'clock I started feeling really good and proceeded with tidying the kitchen, finally the drugs were getting washed out of my system.

Took a whole Hydrocodone and went to bed around 10 and was able to sleep until about 1 o'clock(then got up and started writing this) I ate a bowl of cereal and started feeling nauseous again. My arms have almost full mobility and there is very little pain in the surgery area.

Still contemplating on whether to go to Jacksonville or not Friday morning is a bit early to make a decision but we have to tell the hotel by noon if only my stomach would settle.

Zeren is coming to babysit me tomorrow when Ferit leaves for work.

Back home

It is 7:00 pm and we are at home. Dr. Pope told Ferit that everything went as planned, feeling nauseous and tired but overall good.

Exchanging the Turtle Shells for Soft Cushies

Really felt like sitting down and updating my blog sipping a cup of coffee but unfortunately I am fasting for surgery. In about 3.5 hours I will be going into surgery to get my expanders replaced by silicone implants. I had gotten used to these expanders, no need to wear a bra ( they are basically like bike tires cemented to my chest) they looked ok, I was even able to sleep on my stomach. The only problem was that I had to be careful bumping into and hugging people, those acts caused a tramboline effect and initiated shocked stares !

I have been extremely busy since my energy level came back in about 3+ weeks after the last chemo. Work is picking up and I am able to do more with each day. The only problem remaining is my sleep, and since I was not able to take Melatonin (2 weeks before surgery) I have been waking up about 7 times with hot flashes, they are really annoying. Luckily I can usually go back to sleep but would have loved to have an uninterrupted 6 hour sleep.

Chemo damage status:
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My hair is growing like a white fuzz (fur) up and outward so I look like I got electrocuted, it is about 1/3 inch and very fine so not looking quite like real hair. Actually I look like I have mange .. urghh.. thank god for the wigs and bandannas. I am diligently using the most expensive hair products that I have ever purchased for a non-existent hair. ( the complete line of Nioxin) once I am done with surgery will check with the radiation oncologist to see whether I have any herbal supplement/vitamin limitations like I did in chemo. Want to take Biotin to help my little follicles shake the chemo shock off.

My finger nails seem to have survived taxol but can not say the same thing for the toenails (probably because I tried running through taxol which I have no regrest about btw) I think I am losing 3 of them, well I am used to losing those anyways in my long runs, no biggie. There is still some neuropathy in the balls of my foot but it is fading quickly.
The eyelashes are coming back along with the eyebrows(they are microscopic but I see them with a magnifiying mirror)
The weight gain has been major though, to give the scope:
november 2006 : 128 pounds ( ok this was a bit too low)
April 2007 : 140 pounds - -I think this was a good weight for me.
July 2007 : 146 pounds
February 2008 : 162 pounds !!! ( and I can not blame steroids I really ate junk - yesterday I even ate a Whopper and fries from Burger King, it has been years since I had that tho and proceeded with attacking the Girl Scout cookies .. chocolate mint!!)

There were a lot of firsts after my diagnosis during this time:

Did my first 5k after my surgery, Lady Track Shack- which was an all women event benefiting FL Hospitals attempts to get underinsured women mammograms. We ran it as a big group. Jan from work came and Debbie also joined us in the middle of the run with Heather ( which was a great surprise !!).
It was the perfect event to end leg2 of my 4 part journey(today is the 3rd leg and radiation is the last leg)

For the first time since surgery went to college park yoga for the 1.5 hour power yoga session, except the bridge pose and the poses that I was supposed to lay facedown(face down on the floor does not go to well with the turtle shells) I was able to do almost everything I used to do 6 months ago it was so nice to see Theresa and Calvin again.

Again for the first time in 6 months I went out for a short row at Lake Fairview ! I was able to balance and come back dry yey !!

And the finale celebration will be Danskin tri on May 11 !

I am not sure whether I will be able to make it to Jacksonville for the half marathon this weekend I need to be careful that I recover quickly/nicely before I start radiation.

No caffeine -- no writing fairies stopping here as I am just feeling blah ! with hunger ( I actually want my coffee !!! ) Ferit should be updating if I can not after the surgery.

My oncologists take on the Equivocal HER2/neu and other stuff.

Received a call from Dr. M on Tuesday and he started by saying that he should be hiring me (Ferit said it was a polite way of saying that I was too nosy) - I had sent a 5 page fax to Dr. M asking the following questions:

1. Why did they need to do a FISH test since my original IHC was .9 which
was not even close to borderline?
2. What is the relevance of FISH showing Equivocal on my treatment plan ?
3. Will I benefit from a second (or third look) at my individual situation,
particularly by a clinician expert in HER2 positive disease states.
4. Do equivocal results themselves merit Herceptin treatment under close
supervision, due to the known benefits of decrease in recurrence with this
monoclonal antibody?
5. Being ER/PR+ with equivocal HER2+ status is Herceptin treatment of merit?
(This point is driven by data suggesting ER+ status crosstalks with HER)

Here is what he said in a nutshell:

He is very confident in their HER2 expertise saying that they were one of the pioneers who worked with UCLA.

The tumors are not heterogeneous so different parts might show different results ( IHC showing HER-, whereas FISH showing Equivocal. The result is not very surprising and it happens a lot.

From these 2 test results apparently my HER+ is not established and is not highly positive.
Herceptins benefit is directly proportional to the degree of HER positivity so it will not be very beneficial for me.

Even if I was proven HER+ at this point my treatment plan would not change because the benefit I will gain from Herceptin will be greatly be offset and exceeded by the potential cardiac toxicity that a treatment containing Adriamycin topped by Herceptin could cause.

The chemo regimen I received Dose Dense 4 X AC and 4 X Taxol is a perfect chemo for a possible HER+ situation.
( here I have to thank him because I had wanted to drop the Taxol, since the research establishing the fact that HER- patients had not benefited from taxol was published at the beginning of my treatment, and he had not let me drop it )

He said if I wanted to I could still send the slides out to UCLA but I would need to think whether a different outcome will change my treatment plan ( probably not)

He also supported his view of removing my port during surgery ( the other oncologists usually want to leave it in for 2 years in case there is a recurrence)
- To leave the port in is a negative thought.
- The likelyhood of getting an infection or other complication related the port is higher than the risk of recurrence.
- I will be getting surgery anyways (getting the expanders replaced by silicone implants)

The radiation delay ( I will be starting radiation about 8 weeks after my last chemo) did not worry him for my situation either.

So he pretty much put my mind at ease which is what I desperately needed now. I am happy that I am able to believe him and trust his judgments.

A forum post regarding my HER question.

One of the 'Forum Guru's responded to my Help !

Your situation gives me pause.

It appears that your equivocal results on HER2/neu testing may prompt a second (or third look) at your individual situation, particularly by a clinician expert in HER2 positive disease states.

I can think of two scenerios for discussion:

a) Do equivocal results themselves merit Herceptin treatment under close supervision, due to the known benefits of decrease in recurrence with this monoclonal antibody?

b) Being ER/PR+ with equivocal HER2+ status is Herceptin treatment of merit? This point is driven by data suggesting ER+ status crosstalks with HER, and is best left to discussion with your doctors.

Here then is the ASCO guidelines on HER2 testing, specifically discussing "equivocal" states.

"American Society of Clinical Oncology-College of American Pathologists Guideline Recommendations for Human Epidermal Growth Factor Receptor 2 Testing in Breast Cancer


Antonio C. Wolff*, M. Elizabeth H. Hammond*, Jared N. Schwartz*, Karen Hagerty, D. Craig Allred, Richard Cote, Mitchell Dowsett, Patrick L. Fitzgibbons, Steven Gutman, Wedad Hanna, Patricia Keegan, Amy Langer, Lisa M. McShane, Soonmyung Paik, Mark D. Pegram, Edith A. Perez, Michael F. Press, Anthony Rhodes, Catharine Sturgeon, Sheila Taube, Raymond Tubbs, Gail H. Vance, Marc van de Vijver, Thomas Wheeler, Judy Yost, and Daniel F. Hayes*

*ASCO/CAP Expert Panel Co-Chairs

Purpose: To develop a guideline to improve the accuracy of human epidermal growth factor receptor 2 (HER2) testing in invasive breast cancer and its utility as a predictive marker.

Methods: The American Society of Clinical Oncology and the College of American Pathologists convened an expert panel, which conducted a systematic review of the literature and developed recommendations for optimal HER2 testing performance. The guideline was reviewed by selected experts and approved by the board of directors for both organizations.

Results: Approximately 20% of current HER2 testing may be inaccurate. When carefully validated testing is performed, available data do not clearly demonstrate the superiority of either immunohistochemistry (IHC) or in situ hybridization (ISH) as a predictor of benefit from anti-HER2 therapy.

Recommendations: The panel recommends that HER2 status should be determined for all invasive breast cancer. A testing algorithm that relies on accurate, reproducible assay performance, including newly available types of brightfield ISH, is proposed. Elements to reliably reduce assay variation (for example, specimen handling, assay exclusion, and reporting criteria) are specified. An algorithm defining positive, equivocal, and negative values for both HER2 protein expression and gene amplification is recommended: a positive HER2 result is IHC staining of 3+ (uniform, intense membrane staining of > 30% of invasive tumor cells), a fluorescent in situ hybridization (FISH) result of more than six HER2 gene copies per nucleus or a FISH ratio (HER2 gene signals to chromosome 17 signals) of more than 2.2; a negative result is an IHC staining of 0 or 1+, a FISH result of less than 4.0 HER2 gene copies per nucleus, or FISH ratio of less than 1.8. Equivocal results require additional action for final determination. It is recommended that to perform HER2 testing, laboratories show 95% concordance with another validated test for positive and negative assay values. The panel strongly recommends validation of laboratory assay or modifications, use of standardized operating procedures, and compliance with new testing criteria to be monitored with the use of stringent laboratory accreditation standards, proficiency testing, and competency assessment. The panel recommends that HER2 testing be done in a CAP-accredited laboratory or in a laboratory that meets the accreditation and proficiency testing requirements set out by this document."

From: http://www.asco.org/portal/site/ASCO/menuitem.c543a013502b2a89de912310320041a0/?vgnextoid=e73791f49e96d010VgnVCM100000ed730ad1RCRD&vgnextfmt=default

And here is an eligibility statement of HER in a clinical trial that got me thinking on your situation:

"Patients will be considered to be eligible if HER2 expression is documented by one of the following methods: - IHC, 1+, 2+, or 3+ levels of expression or -Gene amplification [FISH], positive as determined by the laboratory performing the test or - Serum HER2 ECD greater than or equal to 15 ng/ml". (Note, this is just to illustrate a clinical trial example).

Our personal oncologist's carry great knowledge on HER2 disease states. As one can see though, you fall in a gray zone which may benefit from the "two heads" theory of help. Hope this helps.

All the best to you and other HER ladies.

Nice weekend

Friday had the chance to meet a BC survivor Tr.. who had coached me with her emails when I first got diagnosed. We went on a short ride in our neighborhood on my lunch break , it is nice to be able to exhange war stories with another survivor. (forgot to take a picture of us together)

Saturday morning on the spur of the moment decided that I wanted to do a 6 mile shuffle and went out, the weather was beautiful. When I came home looking forward to the couch and good book, was greeted by Elif and her friend Lily very enthusiastically cause I was expected to go to the mall with them. Sigh.. I really do not like shopping, but I know that I do damage to the plastic if I go to the mall. Oh well I needed some 'retail therapy' anyways.
Bought 2 books 'Skinny Bitch'
Skinny Bitch in the Kitch: Kick-Ass Recipes for Hungry Girls Who Want to Stop Cooking Crap and a mini book light.

Sunday went to the Florida Freewheeler ride to Lake Mary with Z, and Penny did a nice 33 mile ride ( although Z tricked me telling me to go ahead and get the car to pick her up at mile 28 but then rode almost to the end by the time I came back to pick her up )

This is pictures from Z's first ever group ride.. she looks psyched !




Thought I would be tired when I got home however I had not been to College Park yoga since August and really wanted to make the 2 hour power yoga class Sunday Afternoon at 4:30. I am so glad that I went there. Theresa always talks about life and stuff.. and today she went over falling down and getting up. We were actually in 'plane pose' and pretty much everyone was tumbling down so she said ' You fall you get up, you fall again you get up again.. that is life .. just like this pose' That pretty much is summing my attitude now. The Her/neu being - or positive first freaked me out, but at this point I got soooo fed up with conflicts and grey areas at this point I really do not care. Will send a fax to my oncologist to see whats his take on it on Monday, cant let this linger and spoil my weekend.

HER2 status from Moffit pathology report

I am totally confused and just got this pathology report a friday evening ( will reach out for my oncologist next week)

I had my biopsy on 8/1/07 and the result of the Her2 with IHC was .9 so it was stated that I am her2/neu negative.

However as I was seeking a second opinion from another major cancer center (Moffitt) for my future treatment options ( rads) they requested my slides and following is the report that they faxed to me...

I am not sure what this really means, IHC(the technique that was initially used) was not borderline it was .9 so I do not even know why they decided to do the FISH(which is the next test that is done once the IHC is borderline). What is the next step for equivocal FISH result ? how can the IHC be clearly negative ( .9) and FISH be equivocal -- which I am not sure what that even means in this context arghhh...
I do NOT want to do Herception ( which I should have been doing with the chemo if I am HER+.. )

HER2/neu by FISH: EQUIVOCAL

Ratio of HER2/neu signals to chromosome 17: 1.7
The average of Her-2/neu copies per cell: 1.1
The cutoff point for reassessing Her-2/neu gene amplification is a her-2/cen17 ratio of 2.0

Some google info:

"The original FISH test results were defined as either positive or negative, but an intermediate range (from hereon referred to as equivocal range) has since been described and the clinical significance of this observation remains unclear.34-3
[16:42] arditiaylin: This strategy classifies patients as having HER2-positive disease based on positive results with either test. It is recognized that current data are insufficient to define whether these patients represent true- or false-positives

It is also clear from the panel discussion and literature review that patients with equivocal HER2 test results constitute a poorly studied subgroup with uncertain association of test scores to benefit from HER2-directed therapy.60 The panel suggested that further studies of this patient group would be promoted by defining these test results as equivocal or borderline. The panel elected to use the term equivocal to avoid confusion with borderline positive and borderline negative terminology which is sometimes used in the interpretation of FISH assays. Equivocal results of a single test require additional action which should be specified in the initial report. Equivocal IHC samples must be confirmed by FISH analysis of the sample. Equivocal FISH samples are confirmed by counting additional cells or repeating the FISH test. If FISH remains equivocal after additional cells counted or assay repeated, confirmatory IHC is recommended so that HER2 protein expression is known for the sample with true equivocal gene amplification status. "

" An important gap in the literature identified by the panel concerns those patients with test results in the intermediate or equivocal range. The decision to treat with specific therapies like trastuzumab is by necessity dichotomous (yes or no). However, HER2 test results are derived from a continuous variable, which can be expected to lead to some results falling into a gray area. Adding to this confusion is the fact that there is significant variation in the intermediate ranges for both the IHC and FISH assays. "

"The results of these surveys have shown that there is variation in laboratory performance, particularly for immunohistochemical assays with equivocal positive results or FISH testing with borderline results. The variation in immunohistochemical testing is greater than the variation in FISH testing. These results need to be interpreted with caution; however, as far fewer labs perform FISH than perform IHC, and FISH testing tends to be done in higher volume laboratories. The voluntary enrollment in this educational program leads to only a minority of laboratories doing this testing. Although the exact number of laboratories involved in HER2 testing is unknown, it is thought that about 2,000 laboratories perform HER2 IHC and about 500 laboratories perform HER2 FISH testing in the United States. "

If someone else says that I am in the gray area in anything I will surely rip their heads off !!

Ongoing Workout Log since surgery

October
10/16 - 1.5 miles walk 27:37 18:20 mn/mile 3.3 mph maxhr/avhr-127/117
..........time in heart rate zone: 13:36
10/17 - 2.25 miles walk 38:26 17 min/mile-3.5 mph maxhr/avhr-138/125
..........time in heart rate zone: 30:26
10/18 - First bike ride after surgery 33 minutes 5-6 miles avhr/maxhr 127/150
10/19 - 3.3 mile walk 56:00 17 min/mile-3.5 mph avhr/maxhr-121/137
..........1.5 hour Kundalini yoga
10/20 -16 miles bike ride on trail avg speed 11 mph avhr 124.
10/22 - 4.5 miles walk/jog 1:13:47 16:10 min/mile avhr/maxhr- 124/154
..........Time in Target Heart Rate zone ( 116-135): 55 minutes
10/23 - Spinning class 43:47 avhr/maxhr - 132/150
..........Time in Target Heart Rate zone ( 116-135):20 minutes
..........1.5 hour Kundalini yoga session
10/25 - chemo
10/26 - 1 mile walk 20 minutes avhr/maxhr - 114 125
..........Kundalini Yoga session.
10/30 - Spinning class 42 minutes avhr/axhr - 132/160
..........Kundalini yoga 1.5 hours

November :
11/2 - 2.8 mile walk 44 min 15:45 min/mile avhr/maxhr- 134/160
..........Kundalini yoga 1.5 hours.
11/3 - Spinning class 40 min avhr/axhr - 142/167
11/4 - 6 mile walk 1:40 mins 16:22 min/mile avhr/maxhr - 129/163
11/5 - 17.2 mile bike ride 11.7mph speed avhr/maxhr-133/147 time in zone 1:00
11/6 - Spinning class 40 minutes avhr/maxhr- 141/169
..........1.5 hour Kundalini Yoga
11/7 - 3 mile walk 48:00 mins 16min/mile avhr/maxhr - 134/
11/8 - 1 hour hot power yoga
..........Chemo #4

11/10 - 2.5 hour Kundalini Yoga(mainly meditation and breathing-breath of fire)
11/12 - 3 mile walk
11/13 - 3 mile walk
.........1 hour Kundalini Yoga
11/14 - 17.4 mile bike ride 12mph average 1:27 mins avhr:136 maxhr:151
........time in zone 47 minutes
........1.5 hour Kundalini Yoga
11/16 - 1.5 hour Kundalini Yoga
11/18 - Horrible Hundred ride- did only 26 miles 2:00 hrs 13 mph average.
........avhr/maxhr - 161/190
11/20 - according to my heart rate monitor did some kind of 44:00 minute cardio, do not recall what !! avhr/maxhr - 146/171 .. looks like spinning.
11/21 - weight training
11/22 - 1 hour indoor cycling/spinning - avhr/maxhr- 150/171
11/23 - weight training
11/24 - 41 mile bike ride with Florida Freewheelers C/D group picnic ride, 14.2 mph, 2:47:00 hrs avhr/maxhr-155/177
11/25 - 6 mile walk/jog shuffle, 1:27:00 hrs avhr/maxhr-160/184-- a bit high have to check whether my red blood cells dropped. 14:30 min/mile. 1.5 minute jog, 1 minute walk. Expanders which are looking like monster boobs might also be compressing my rib cage preventing me from breathing well.( rumor is a gals ribs cracked from the pressure of an expander)
11/26 - Weight training and 10 minute erg - left chest muscle is challenged might need to give a break.
11/28 - 1 mile run 12:40 min/mile. weight lifting
11/29 - 1st Taxol treatment chemo#5/8


December

12/5 - 1 hour lower body weight training, 1/2 mile run. Chest muscle still compromised cannot do any upper body or core.
.......1.5 hour Kundalini Yoga
12/6 - 1:08 hr bike ride, 14 mph, avhr/maxhr-158/170 17 miles
12/7 - 1 hour weight training, 1 mile run.
12/8 - 1.5 hour Kundalini Yoga
12/9 - 33 mile bike ride, avspd 15mph, avhr/maxhr -
12/10 - 1 hour weight training, lower body, 1.5 mile run
12/11 - Led the 40 minute spinning class(for the first time)avhr/maxhr-163/178
12/12 - 1/2 mile run,1000 meter erg at 2:13 pace. 1 hour weight training ( upper body, the chest muscle did not talk back I was even able to hang )
12/13 - 6/8 Chemo taxol.
.
.
12/23 - 6 mile jog/walk. 1 min run/1+ min walk. 1:30 hours 15 min/mile -
........avhr/maxhr - 158/183.
12/24 - 53 minute spinning class avhr/maxhr - 161/178
12/26 - 51 minute spinning class avhr/maxhr - 154/174 - was able to exert myself really good this time.
12/27 - 43 minute 3 mile jog avhr 166 maxhr 172 14:20 min/mile 2 minute jog at 5 mph 1 min walk at 3 mph.
12/27 - 7/8 Chemo Taxol 1 more to go !
.
.
January

1/2 - 54 minute spinning class avhr/maxhr-151/171 - not able to exert
1/3 - 3 mile jog/walk- 1 min jog at 5mph, then walk until recover(1-2 min)
.......48 minutes 16 min/mile. Avhr/maxhr- 158/174 Treadmill - felt quite wiped out
1/5 - 1:29 hrs easy bike 12 mph 17.3 miles avhr/maxhr -151/171 -- this not sleeping
.......is really getting to me.
1/6 - 7.3 mile walk/jog 16:10 min/mile 1:58 hrs. avhr/maxhr - 151/172
.......Started with 1 min walk 1 minute jog, then the jogs got a lot longer, I am
.......glad that I was able to finish did not feel wiped out, but the knees were
.......a little weak.
1/7 - 45 minute assessment with Personal trainer, going over the machines at the
.......gym.
1/8 - instructed 50 minute spin class avhr/maxhr - 159/180
........1.5 hour Kundalini Yoga Session
1/10 - 1:24 hrs bike ride intervals about 16 miles.. avhr/maxhr - 161/191
1/11 - LAST CHEMO TAXOL yey !!!!
1/12 - 2+ mile walk with Candy- 40 minutes
.......1.5 hour Kundalini Yoga session
.
.
.
1/16 - 3 mile jog/walk with Candy 41 minutes 13:36 min/mile avhr/maxhr - 163/185
1/17 - 500 yards in the pool(first time in 6 months) my arms are tired.
.......30 minute express weight workout at the gym, 20 minutes elliptical,verytired.
1/20 - 9 mile jog/walk- 2:24 hrs 16 min/mile avhr/maxhr - 156/182
1/21 - 3.5 mile walk with Candy, 1:10 hours
.......1:30 hour bike ride from WaterFront Park at clermont on the trail with
.......rolling hills, about 16 miles. avhr/maxhr - 140/168
1/22 - Lead the 50 minute spinning class, and this time pushed myself.
.......40 minutes power yoga(downward dog pose is not aggreeing with my arm having
.......lymph nodes removed, have to find a pose modification.
1/23 - 40 minute chi kung - AM
.......40 minute light weigths - PM
1/28 - 3 mile jog/walk avhr/maxhr-168/189 -- stressful day reflecting on heart rate
1/29 - Instructed 45 minute spin class avhr/maxhr - 160/180
1/30 - 3 mile jog walk 42:00 min 14 min/mile avhr/maxhr - 153/181
.......30 min light weights pm
1/31 - 2.85 mile jog walk 41:00 min 14:24 min/mile avhr/max-142/185



February :
2/1 - 9.5 mile bike ride 40 minutes avhr/maxhr-?
2/2 - 6 mile - 1 minjog/2 min walk 1:25 hrs 14:10 min/mile avhr/maxhr-153/180
2/3 - 33 mile bike ride moderate effort. 2+ hours
2/5 - lead 50 minute spinning class
2/7 - 3 mile jog/walk on dreadmill 1% incline. 48:30 min/maxhr - 140/169 16 min/mile
2/8 - 40 mile bike ride avspd around 14, planned 53 miles but got fatigued.
2/10- my first 5k race Lady Track Shack, 39:23 min.
2/12 - my first sculling day ! easy rowing around Lake Fairview in about 40 minutes.
.
2/14 Expander exchange surgery ( 2 week minimal activity, 6 weeks no intense workouts allowed)
.
2/23 - 1.5 hour Kundalini Yoga session
2/25 - .6 mile walk with Candy
2/26 - 50 minute spinning session
2/27 - .6 mile walk with Candy - 1.5 hour Kundalini Yoga session
2/29 - .75 mile walk with Candy
3/1 - 1.5 hour Kundalini Yoga session
3/2 - 2 mile walk with Candy
3/3 - 1.5 mile walk with Candy
3/4 - 40 minute walk with Candy









Training plan for the Jacksonville Breast Cancer Half Marathon February 17-not running it but will go to the event.

Week Start Date Length of long jog and/or walk

08-Oct-07 Chemo on thurs 4
15-Oct-07 4
22-Oct-07 Chemo on thurs 5
29-Oct-07 4
05-Nov-07 Chemo on thurs 6
12-Nov-07
19-Nov-07 chemo break for t-giving before going on to Taxol !
26-Nov-07 Chemo on thurs
03-Dec-07 6
10-Dec-07 Chemo on thurs
17-Dec-07 8
24-Dec-07 Chemo on thurs
31-Dec-07 6
07-Jan-08 LAST CHEMO ON THURSDAY ON THURSDAY JANUARY 10 !!!
14-Jan-08 8
21-Jan-08 10
28-Jan-08 6
04-Feb-08 4
11-Feb-08 Event on Saturday