HER II and Taxol Trial

Lucysmom · February 2010

kimbers- everything I have read indicates that the effects should be cumulative. That being said, my experience has been pretty mild. I get pretty bad back mylagias, sometimes chest wall pain and leg pain, usually day 3, 4 and 5..sometines it lasts for 3-4 hours at a time, sometimes longer but less intense. There have only been 3-4 days total where I couldn't handle it and needed help, (ie childcare) and those episodes passed pretty quickly. I am a pretty big fan of at least once or twice a day Motrin on days 2-5 and tons of hydration, even if I don't have any symptoms yet. Week 2 and 3 I had some of the less common skin reactions..I got a pretty bad case of hives (I had talked my oncologist into lowering the premed decadron from 8mg to 4mg, so the hives were my fault) but then developed a raging folliculitis..it was like I had thousands of pinpoint zits everywhere..felt like a million mosquito bites on sunburn.

My hair --ugh. I have lost at least 75%, and cut it twice since I started treatment. I started thinning after week 4; I did not have clumps fall out or wake up with massive amounts of hair on my pillow. I started out with tons and tons of really thick hair, so that is probably what is buying me a little more time before I need to start wearing my wig. There are anecdotes on the web about people who don't lose their hair on taxol, but that seems less likely. I think taxol is pretty merciless in this regard.

Most of the other side effects are mild..fatigue, intermittent diarrhea and constipation, mild nausea but no vomiting, some gastritis from the steroids.

Supposedly weight gain is pretty common on this chemo regimen. I do some exercise a few times a week..nothing over the top, but I walk 30-45 minutes, or take a yoga class, or put on a corny CD and have a dance-a-thon with my daughter. I am sure this probably helps with other things like fatigue, constipation, minor aches as well.

One last comment on neuropathies. I have had zero numbness, tingling, nerve pain so far. It's still possible to develop that late in treatment, but right now I am symptom free. My oncologist recommended acetyl-L-carnitine in large doses..1500 mg twice a day. It's a little pricey ($38 for about 20 days) You might ask your oncologist about what his/her favorite supplement is for neuropathies.

OK I am rambling! hope this helps!

joansf · February 2010

Good morning. To Lucysmom: I would also like to know how you've managed symptoms. I'm concerned about cumulative fatigue, and I've been trying to stave off the anemia with diet and supplements. I've cut the Zofran down to just one day, because my digestion is moving so slowly! What about neuropathy? Have you had it? Do you think that can be prevented with diet/supplements. More importantly, I've read about a drug called amifostine--has anyone been prescribed that. Also for neuropathy--decadron for 2 days after; prednisone for 5 days after (if you can handle the roid rage). Finally, what about chemo brain, have you had it and what do you know about preventing it?

To Kimber: This Thursday, we'll be one-third done!! I'm doing OK. Very slight achiness, but slowing down a little more. Which oncologist do you see?

kimbers · February 2010

Lucysmom- thanks for all the great info!! that was very helpful to read.

I also get fatigue, diarrhea (usually on infusion day) and some constipation. I take miralax for the constipation and it works great! I got myself in trouble after my surgery so now I just take it everyday. Also, I take vitamin 100mg vitamin B6 and glutamine for neuropathy and so far I have not had any.I do find that I am forgeful sometimes, but it could just be stress and fatigue.

It looks like lucysmoms, Joansf and I all were diagnosed in October - what crazy time it has been.

Kimber

Mocity · February 2010

Kimbers,

I did the 12 weeks of Taxol/Herceptin and then Herceptin every 3 weeks for a year. I finished that up in Nov09. If I can help in any way please send me an email. I started losing my hair in week 4 and went to my hairdresser and had it shaved. I felt pretty darn good until week 8 or so. Some people feel pretty good the entire time. Just take one day at a time!

Lucysmom · February 2010

Regarding the GI symptoms, I have had some nausea but no vomiting, so I haven't taken any of my Zofran. Most of my stomach upset feels like gastritis..burning, sharp, so I am assuming it's from the steroids. I take tums and wait for it to pass. Sometimes it's pretty uncomfortable, but it's hard to tease out which side effect is from which med, so I cut out whatever I feel like I can live without. Some of the stuff I used while pregnant helps..ginger, crackers, etc. I also had great luck with accupressure wrist bands; you can get these in the "motion sickness" aisle at most drug stores.

I have not had any neuropathy yet..the only supplement I take is the acetyl-L-carnitine. If I get a chance to do some more reading on this, I will post more later. I know a lot of people use different amino acid and VitB supplements with mixed results. I think this is well worth asking your doc about, because it sounds like it can be pretty debilitating when you get it.

In no way am I a super fit or active person, but I will say that walking has helped me more than anything these past few weeks. It's really really hard to get motivated to move when I feel tired, but it can change my whole day..it ameliorates some of the steroid effects, gives me an energy boost, and clears my head. I also go to bed about 15 minutes after my daughter does, and sleep from 8pm until 6am! Realize that not everyone has that luxury.

After I picked my chemo plan, I focused on reading anything I could on non-prescription remedies..a big jump for me! Without turning into a vegan or doing anything drastic, I am tweaking my diet, exercise and wellness outlook a bit at a time. And (cynical doctor that I am) I am trying to say yes to as many suggestions as people throw at me..group therapy, Reiki (amazing) yoga, massage, nutrition counseling, etc. I am giving a lot of things a chance that I might not have before, and am learning a lot.

Hope that does not sound too hippie dippy! Keep up the good fight. We are all our own best advocate and diagnostician..keep searching out what's best for you and trust your gut. More later!

kimbers · February 2010

Hi ladies,

Just finished #4 today. That makes me 33% done! The infusion went well. I'm just really tired now.

How is everyone feeling?

Joansf- maybe one of these days we will run into each other!

Take Care,

Kimber

joansf · February 2010

Hi all--Like Kimber, I made it through #4 yesterday. I'm on dawn patrol, though, only two hours sleep thanks to the steriods. Onco has been reducing steadily, but here I am, and in the grand scheme of side effects, this is easy. Hope everyone is well. Congratuations to us both Kimber! xo, Joan

joansf · February 2010

I would like to add--any ask if anyone's in the same boat...There is not enough room in the diagnosis checkbox for this, but in addition to the HER 2 tumor, I have a 1.1 cm ER/PR positive tumor and 8cm of high grade DCIS. Did anyone else have 'multiples'? I've only had a lumpectomy so far--the extent of the cancer wasn't obvious until the MRI, and even that didn't show how much DCIS--, and although my hospital so far seems to be in favor of breast conversing surgery (no mastectomy), my 2nd and 3rd opinion docs both volunteered I should have mastectomy, my gynecologist agrees, and it seems like a no-brainer to me. Any thoughts? Experiences? Also, the mastectomy camp advised against nipple sparing. Thanks, Joan

kimbers · February 2010

Joansf-

I also had over 3 cm of high grade DCIS. The DCIS was multifocal and I am small chested. My BS said mastectomy was my only choice. I also had an MRI on the other side and there was something suspicious the doctor's wanted to biopsy. I decided on a bilateral. A very hard choice. There was atypical ductal hyper plasia in that breast. I went with skin sparing mastectomy. I have my areolas but BS recommended against keeping my nipples. My DCIS was close to my nipple. I had TE put in. Unfortunately, one of the TE had to come out because I had some skin that was not healing. So, I have one side that looks great and the other side I will have wait til I am done with taxol to put the TE back in. I think reconstruction makes a world of difference for me and I can't wait to get it fixed. Let me know if you have any other questions.

Was wondering is anyone's blood counds dropped during the taxol. So far my has been fine.

Also, I was wondering about the possible weight gain on the regimen? Is it because of the steroids? My weight has been stable.

Thanks!

Kimber

Mocity · February 2010

Kimber,

When you get those expanders out you will feel much better... I sure did and am happy to be sleeping on my side! I was also too small chested to have a lumpectomy. I had both the nipples and areolas removed. My nipple reconstruction didn't really take but I am not sure how much I care at this point. I am going to get tatoos to try to make it look more natural. The nipple surgery was very minor.

My book counts were fine the whole time I was on the Taxol and Herceptin.

I did gain weight and can't get it off. I gained about 15 pounds on top of the 15 I had to lose. Now, I am taking Lupron which keeps me in medical menopause (I am 38). I have been exercising but it isn't coming off. BUT everyone is different so you might lose weight... who knows. I wish I would have walked or something during chemo to combat the weight (maybe) but oh well. Work that is if you can!

Take care,

Cristl

kimbers · February 2010

Hi ladies,

Well, my hair is definately starting to thin. I've had some pretty big clumps come out. Is the best thing just to shave it off? I still have a lot of hair left but I feel like I'm shedding now! Plus, I get some mild acne with the Herceptin. I feel so lovely:)

Also, did any of you get a sinus infection while on Herceptin. One of my ears is bothering me and it feels like a sinus infection. I guess I will have to call the doctor.

Have to go watch the end of the Super Bowl. Hope everyone is feeling good.

Kimber

joansf · February 2010

Hi All! I wanted to ask Lucysmom if you could elaborate on why you chose this treatment protocol. You said you got four opinions. I would love to hear more about where you went, what the range of opinion was etc. I had someone tell me I should travel to MD Anderson and Sloane Kettering, which I did not. I went to two well-regarded university medical centers in Northern California as well as our community hospital. In the end, there was not a clear consensus...1. do the trial, 2. do 'more chemo' i.e. adriamycin; 3. your risk is low, the benefits of chemo--factoring toxicity risk--will be small, so the choice of whether to do chemo is up to you, but if you have chemo here, it will be a 4-6 mo course. So in the end, I made this choice. I wonder what helped you in your decision.

msmpatty · February 2010

I did ACx4 every three weeks and then weekly Taxolx12. I finished 10 days ago. I did really well on the Taxol...pretty much no nueropathy (a little intermittent numbness in fingers), no achey joints, no nail problems. The major SE I experienced was fatigue, but it didn't set in until the second half of the treatment and then only lasted a couple days each week. Although the infusions took forever, I learned to enjoy the quiet time. Best of all....my hair started growing back about week 5!

I had my doubts about selecting such a long and infusion intensive regimen, but I found the Taxol very tolerable and time went quickly.

Patty

PS to Kimbers - My blood counts remained completely normal throughout the Taxol.

Lucysmom · February 2010

Hi joansf--Here's what I was thinking at the time. I'll try not to ramble.

First of all, I am a single parent of a 4 year old. I elected to have a prophylactic bilateral mastectomy against all my doctors' recommendations. My fears and paranoia about long term survival fueled my interpretation of the treatment data. For this reason, NOT pursuing chemo did not seem like a comfortable option for me. I had a mammogram March 09 (clear), repeated in Sept 09 (follow up for a small amount of nipple discharge that was negative for cells and blood) which showed microcalcs). Path report showed 4mm invasion. Opposite breast scattered early atypicals. Her2 5.7++ I felt like I was infested with a small but pretty nasty, aggressive lesion.

I can go into more detail on any of this, but this is the way I interpreted the data. Recurrence risk 20-30% for all her2+ cancers. Extrapolating herceptin data from its use in treating advanced cancers, without clear data on it's use in early Her2 positive cancers, the risk reduction for recurrence should be 50% with herceptin. Noone is using herceptin without adjuvant chemo, so the real question for me, was which cocktail.

Adriamycin has documented efficacy against Her2+. Some newer studies pit taxol against adriamycin, and the best I could estimate was a 2-5% difference between the two. So, I felt like herceptin dropped me down to 10-12% recurrence risk, ANY chemo dropped me another 4-5%, so my overall presumed recurrence risk was 8-10%.

My oncologist is Kathy Albain from Loyola (chicago); I also had second opinions at the University of Chicago, University of Michigan and MD Anderson. None of these other centers are involved in the Dana Farber study, so I could pick their brains without the prejudice of trying to get another patient enrolled (I wasn't really concerned about that but some people are). I was given a copy of the the massive study protocol, which outlines the background and rationale for taxol/herceptin, and then did a ton of reading about Eric Winer (principal investigator on the study). I had surgery at a large local community hospital, and my surgeon took my case to the tumor board oncologists.

The overwhelming consensus was to take it. My U of C doc made the comment (regarding an adriamycin based regimen) that I wouldn't markedly change my odds, but "do you want to survive breast cancer and end up with a heart transplant?" My U of M doc said that she uses the same Taxol/herceptin regimen on some of her patients, even though U of M is not a study center. My tour of second opinions occurred the week before the San Antotnio Breast Cancer meeting, as well as the month that 4 articles on early Her2+ came out in Journ of clin oncology. BTW, the community hospital oncs were on the fence about any chemo, with a "wait and watch" approach.

No regimen is perfect, but I felt like the taxol would give me similar survival odds as adriamycin without the cardiotoxicity, and the protocol required concomitant herceptin, instead of sequential, which I think is very important. There's also the comfort of tight, long term monitoring and follow up inherent in being a study participant.

None of this is clear-cut. Early small her2+ cancers are, in many ways, unknown entities. If I had to state a strong opinion, I would say that if you are getting chemo, you are getting herceptin ALONG with the chemo form the beginning, and you have a good relationship with your oncologist, you are probably on the right track. At least, that is what I am doing, and I feel very comfortable about my choice. Not happy that I had to make it, but we all know that!

Hope this helps; sorry again for the long post.

joansf · February 2010

Lucysmom--thank you so much for so much information. It's very helpful. For myself, I stayed with the first oncologist, who put me in the study. But I went for the second opinions because I was frustrated with my communication with her. The second and third opinions helped me understand that there were other treatment options, and that there was some controversy about how to treat this cancer. I went back to the first oncologist partly because she was so committed to this approach, and also because I could communicate better with her once I had more info. Learning about your thorough research helps validate my decision. Best, Joan

kimbers · February 2010

Hi ladies,

Joansf and I finished #5 today! And we finally met in person. It was really nice to finally meet you and get a chance to talk for a few minutes.I'm sure we will see each other again and maybe can sit next to each other sometime.

Lucysmom - I used to live in Chicago. Great city! My oncologist at Stanford and UCSF both thought the trial was the best way to go. I'm happy I'm doing it and I feel like I'm getting benefit without horrible side effects. Question: did you end up shaving your hair? Mine is thinning and it is getting messy!

Have a great weekend!

Kimbers

roso88 · February 2010

hi joansf, kimbers & lucysmom,

i was diagnosed with Stage I Grade 3 IDC in early nov 2009. after a partial mastectomy and re-excision, i signed up for this TH trial at dana farber and had my first infusion last wed, feb 10th.

they had me take 12mg of steroids morning of. luckily, i didn't have any allergic reactions and so far side effects have been minimal - muscle pain (resulting in some restless leg syndrome) on days 3-4 and runny nose.

i'm dreading the hair loss at week 4. i've heard that some people just have mild thinning so i'm hanging onto hope but have purchased a wig nonetheless.

i'm so glad i stumbled upon this forum. was starting to worry that the trial was very experimental (for lack of a better term) since most women i've met with a similar diagnosis was on the TCH or ACTH route.

my first onc at a different Boston hospital recommended ACTH with TEXT trial which was overkill so i got a 2nd opinion at dana farber. my onc at the farber is highly regarded and her reasoning for TH over more aggressive treatments is similar to what Lucysmom explained. the risks of ACTH long-term effects outweighed the risk of recurrence/metastasis (which is cut down to under 10% if you do chemo, Herceptin, radiation & hormone therapy) for node negative HER2+ breast cancer. i figure i'm still doing what i need to - getting chemo with the Herceptin (which will make it more effective) but less side effects to deal with.

since you ladies are a few weeks ahead of me in treatment, i'll be following your posts very closely. thanks for sharing your TH journey and best wishes that the remainder of your infusions go well.

~ cathy

kimbers · February 2010

Hi Cathy,

last week I have infusion #5 and I'm doing pretty well. My biggest complaint would be fatigue. So far no neuropathy. I take Zofran if I'm feeling some nausea. My hair is really starting to thin out but I have not shaved it off yet. I had pretty thick hair and it is barely hanging in there. Let us know how you are doing!

Kimbers

lbreedl · February 2010

I just had my 4th neoadjuvant treatment of 12 TH today, 8 more weeks to go, then 4 rounds of FEC every 3 weeks keeping the herceptin going every week. then H every 3 weeks to complete a year. Not a trial but onc said they had much success with one but she could put me on this now and be sure I got all the bullets. ki67 was high, she said no point to do onco since she already knew I was high risk. I said I wanted to be very aggresive. I'm at MD Anderson. Still have the hair so far. Nurse told me half loose hair about halfway through.

Laura

joansf · February 2010

Hi Ladies! Cathy--good luck tomorrow on treatment 2! Hi Laura--I'm looking forward to hearing you share your experience. Kim and I are coming up on #6--yeah! This week has been up and down--active days and tired days--my treatments are thursdays, and I get achey on Mon and Tues so I'm pushing the motrin today. Hope everyone is well...Best, Joan

roso88 · February 2010

hi ladies,

i'm on week 2. hoping you know some tricks to better deal with the SE's. also, anybody know what's causing what?

- muscle pain in the lower back, hip & legs on days 3-4 of week 1. chemo nurse recommended Motrin but i thought we weren't supposed to be on Ibuprofen or blood thinners? is it the Benadryl causing this - they lowered my dose in half this week and so far, no pain.

- acne. not only is this really annoying but they're painful. can't figure out if it's from the decadron, Taxol or Herceptin. my moisturizer has spf15 so i switched to one for sensitive skin today. hoping this will help.

- for all the pre-menopausal ladies, has the chemo affected your menstrual cycles yet? my chemo nurse said it usually takes a few rounds before the period goes away completely but so far, mine is late. sorry for TMI but this has me a bit concerned.

- bloody nose. have only gotten 1 so far but it came out of nowhere and freaked me out.

- random chest pain on right side. only happened twice and was very very brief.

hope everyone is coping better than me Tongue out

joansf · February 2010

Hi Roso--re muscle ache: I have had a problem too, and they advised me to take motrin--600mg...3 pills. I hope that helps. I haven't experienced the other symptoms. Beyond that, I am taking supplements/vitamins to prevent neuropathy and to help fight the fatigue. Let me know if you want that info--I ran it past the chemo nurse, and she was fine with it. Take good care of yourself...Best, Joan

kimbers · February 2010

Hi ladies,

Just finished #6 this week.

Rose - I also have had some acne. I think it is from the Herceptin. I'm going to try some Neutrogina products my dermatolgist recommended. I also was told to take Motrin for muscle aches. I have had my period during chemo. I don't know if it will continue or not.

I don't know about chest pain but today my sternum is really sore...anyone else have this?

Joan- what supplements are you taking for fatigue?

Kimbers

GrandmaMickey · February 2010

KIMBERS and JoanSF - I too go to UCSF - I drive from a small mtn community east of Chico- I finished a/c in December and am on heceptin and taxol until 4-6-10 - then I'll have a uni mastectomy with TE - I do 2 weeks in Chico CA and then drive to UCSF for the 3rd and see my doc there. I have fatigue and neuropathy in my feet - a little in my hands. Other than that, this is much better than A/C. What a rollercoaster ride we are on! Good luck to all.

joansf · February 2010

Kim--Well, it's pretty nutrition 101, so I'm not sure it'll be anything new for you, but...I take iron, vitamin c, B-12, and folic acid. (the clinic nurse warned that the iron can be constipating) For iron... I'm trying to eat roast beef sandwiches on whole wheat for lunch...dark green leafy vegetables--I like spinach for salad so that's been easy; we've also been making juice with kale and pears, also beets and carrots--tastier than it sounds. Breads and cereals can be iron-fortified--cheerios actually has a lot of iron. And I read it's better to take a 15 min walk and a 45 min nap than to sit home for an hour! I'm sure your children keep you up and running--how are you managing?

Does anyone have more suggestions about fatigue--food, supplements, etc?

Hi, Grandma Mickey, can I ask about your mastectomy--where are you having it? Are you doing nipple sparing? I was all set on having a skin sparing with nipple reconstruction/tattooing ; but UCSF seems more keen on nipple sparing.

Actually, I'd like to ask everyone who's had the surgery or is planning to what their doc's recommendations were and what surgery they had.

Thanks. xo Joan

roso88 · February 2010

joan - my clinical research nurse at Dana Farber recommends at least 800-1000 iu of Vitamin D and 1500 of calcium per day. as for vitamin c, i thought it was a no-no with chemo (something about making it less effective)?

kimbers - i haven't encountered sternum soreness yet. let me know if you figure that one out. talked to my team about the mild acne/folliculitis (not sure which one i have), they're going to give me a topical cream. will let you know if it works.

for anyone with muscle aches, try asking if they can cut the benadryl dose - my chemo nurse did it for me last week and i haven't had any aches since.

my appetite came back this week so i've been eating heartily. have to say that it's really helped with the fatigue.

can i ask how everyone is doing with the hair situation? my scalp has been itching...not sure if it's just dry scalp or a sign of what's to come. i'm not shedding yet.

have a great week ladies!

joansf · February 2010

Roso--thanks for the info on the calcium/vit D--I take the viactive chews, so I'll go from 2 to 3. thanks for the note on vitamin c--I'm just googling and I see what you mean--I'm going to ask about it at my clinic appt this week.

Glad you have your appetite back-- Isn't it great when the fatigue lifts?!

Good night, ladies!

HES112 · February 2010

Hi Ladies,

So glad to see this post has so many new women responding. I originally started this post because I saw a variety of different treatment options but nothing about this particular trial. I am thrilled to see so many other women in the boat with me. I finished my taxol and herceptin in September of 08 and completed the years worth of Herceptin in July of 09. I also tolerated the treatment well, except for a few side effects. Also lost my hair after week 4 but I am happy to say that it is almost to my shoulders again. I am so thankful for every day since having gone through this and I hope that all of you stay strong through your treatment. Throughout all the tests and the chemo and radiation I felt that nothing was as bad as I had anticipated. I believe if you keep your thoughts and spirits positive,that it very helpful.....Hope

joansf · February 2010

Dear HES--thanks for starting this post. I found it googling taxol/herceptin trial, and it's what brought me to this website. I'm glad to hear you're doing so well. Best, Joan

kimbers · February 2010

Hi ladies,

Yes, thank you Hes112 for starting this post. It is nice to have women to talk to who are going through similar treatment. Glad to hear your hair grew back Smile and you are doing well!

Going for #7 tomorrow. The weeks go fast. Last week was a litte rough. For the first time, I felt achy but I was able to do a little exercise today. It was a nice sunny day which always lifts my spirits.

Hope everyone is having a good week.

Kimbers

HER II and Taxol Trial

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