Tykerb side effects
 

Hello everyone!

I've been taking a look at this forum and would be very interested in responses to my question about the side effects of Tykerb.

In the UK, I have been offered participation in the ALTTO Trial which has 4 arms one of which is Tykerb alone for a year or within other arms, a combination of Tykerb and Herceptin.

I'm anxious about the side effects and am trying to make an informed decision about whether or not to participate in this trial. I have a very demanding job and don't wish to take a drug that may cause difficulties.

I have also been offered the chance to participate in the PERSEPHONE trial which compares Herceptin taken over a year or 6 months.

It's hard having to decide between the two trials, or of course not engaging with any trial and just going for the Herceptin for a year.

I've read about rashes and acne with Tykerb. Are these common side effects? What else might I expect were I to take Tykerb (I realise of course that side effects can be different for everyone).

Many thanks

Gill

Hi Gill-

a few things to help you while you consider these trials... and I thank you for considering participating as I believe these trials are very important for refining the future of HER2 treatment for those who come after us!

1. Tykerb crosses the blood/brain barrier, and is currently
thought to perhaps protect the brain from metastasis if used in early treatment. Not a bad reason to participate in a Tykerb trial. Some on here have combined Tykerb with Herceptin already and are tolerating it well. Also, there was a newer study posted here a few weeks ago that spoke to the promise of Herceptin with Tykerb...

2. There is no telling whether the Herceptin for a year is the answer for you or not. It has contributed to putting some of our members in remission for many years and then others of us have had recurrence after a year or more of Herceptin... it's all just a big unpredictable ball of confusion at this point in time, but we all hope to have predictive testing on our side within the next 5-10 years. I hope they hurry!

3. Tykerb side effects vary by individual. I have been very fortunate to have had very little side effect from Tykerb. I got a very mild bout of dry skin on my cheeks for about 2 weeks and it disappeared. I had about 2 months of sporatic diarrhea, but that went away with a disciplined diet and my body getting used to the drug, and after more than a year I have virtually no side effect. Some here have had much more acute side effects. It just depends on the individual.

Good luck with whatever you decide. I wouldn't worry too much about the side effects. I think they are very manageable and can be easily mitigated.

Brenda

Hi Brenda

Thank you for your response which I appreciate. It's so hard being presented with two trials and trying to make the right decisions.

I'm currently undergoing chemotherapy and am participating in the TACT 2 trial. I really do believe that clinical trials are imporant knowing as I do, that I'm benefiting from those who've gone before me.

I so want to get this decision right - your comments are enormously helpful as I try to weigh everything up. I'm doing my best to balance my quality of life with treatment and am hoping that after this I will not need anything further other than reconstruction surgery. Your comments have been helpful

Thanks!

Gill

Hi Gill-
I have been on Tykerb and a variety of drugs for a little over a year. For the past 6 months Tykerb & Herceptin (and for the past 3 plus months I've added in Avastin & some Zometa). All my therapies are targeted and easy to tolerate.

I would say that compared to chemo that kills rapidly dividing cells (all other non-targeted therapies) Tykerb/Herceptin is easy to manage.

Brenda said it well and I would agree with her points. The side effects really dissipate over time. I think the rash & acne side effects appear early on but are not bad and the only person to notice would be you. The diarrhea from the Tykerb for ME has improved and is very manageable mostly through diet.

I was on herceptin alone for 20 months in 2002. It was after I stopped Herceptin that I had local recurrences. But it wasn't until 2007 that I was diagnosed stage 4.

I don't know if I "should" have stayed on herceptin. My docs were not recommending it at the time. It's all such a guess and that's what makes it so hard.

Let me know if I can answer any specific questions - PM me.
Flori

will post this as a separate thread as well
 

it just confirms that the dermatologic side effects seem to be mild

: Breast Cancer Res Treat. 2008 Jul 4. [Epub ahead of print] Links
Analysis of dermatologic events in patients with cancer treated with lapatinib.

Lacouture ME, Laabs SM, Koehler M, Sweetman RW, Preston AJ, Di Leo A, Gomez HL, Salazar VM, Byrne JA, Koch KM, Blackwell KL.
Department of Dermatology, Northwestern University, 676 North St. Claire Street, Suite 1600, Chicago, IL, 60611-2941, USA, m-lacouture@northwestern.edu.
Purpose Dermatologic events (DEs) in patients with cancer treated with lapatinib, a small-molecule dual tyrosine kinase inhibitor (TKI) of epidermal growth factor receptor (EGFR [ErbB1]) and HER2 (ErbB2), were characterized. Patients and methods Nine clinical trials of metastatic cancer were included in this analysis. Lapatinib was administered at doses ranging from 1000 to 1500 mg/day as monotherapy (n = 928) or in combination with paclitaxel or capecitabine (n = 491). Patients not treated with lapatinib comprised the control group. Dermatologic events included hand-foot syndrome, rash, hair disorder, dry skin, pruritus/urticaria, skin disorder, skin infection, and nail disorder; DEs were characterized based on type, time to onset, severity, duration, and required interventions. Results Fifty-eight percent of patients treated with lapatinib monotherapy, 74% treated with lapatinib plus paclitaxel or capecitabine, and 53% in the control group developed DEs. Among patients receiving lapatinib monotherapy, 55% experienced grade 1/2 DEs, 3% had grade 3 DEs, and no grade 4 DEs were observed. The most common DE was rash (43%); all other events occurred in </=8% of patients. Most DEs developed between days 1 and 14 of starting treatment, with a median duration of 29 days. Three percent of DEs led to lapatinib dose reduction, 7% resulted in dose interruption, and 1% led to drug discontinuation. Conclusions Most DEs in lapatinib-treated patients present early, are mild to moderate in severity, and infrequently require dose modification or treatment interruption. Lapatinib-associated DEs appear to differ clinically from those associated with EGFR TKIs in both frequency and severity.
PMID: 18600445 [

Flori and Lani

Thank you so much for taking the time to provide information and your thoughts on Tykerb. I appreciate it very much.

It's such a hard decision and everything has to be balanced up. I had a meeting today at the hospital and finally decided not to go on the ALTTO trial but instead will join the Persephone Trial - herceptin for either a year or 6 months.

During the discussion we talked extensively about the unknowns of Tykerb for early breast cancer and also the effects on my lifestyle ie. my job. I think the right decision has been made, but will never know for sure. It's not been easy deciding!

Thank you for your comments! :)

Best wishes

Gill

I wish I read your question sooner but have not checked postings for a while. I have been on Tykerb for 18 months with very little side effects. No rashes and very infrequent diarrhea which I attribute to my diet as it is very common. I am now on a trial(1 month) which is double does tykerb only 5 days on 9 days off..still feel great! Hope that helps!

This is to Turbo. I may start Tykerb in a couple weeks and would like to know about the foods you are eating with it? I see you attribute the diarrhea to your diet, so am very interested to know which foods? I am mainly on a Macrobiotic food plan with eating whole grains and greens every day. All fresh egetable and no processed foods. How do you think this will fit in with Tykerb?
I hope you get thi, I really don't know how to respond to peoples responses in the forum or threads. Thanks ,Mary Jeanne

MJP - your diet should serve you well on Tykerb. No junk and as whole and fresh as possible is the key that works for me. Just stay disciplined with your diet and you should do well. Your body might take a little while to get used to it even on a good healthy diet, but it should settle down after a few weeks or couple months.

Thanks for the info. I just wondered how much sugar/ desserts? breads? do you eat? That has been the biggest "cheat" for me on the Macro diet. I eat no eggs, or dairy or chicken. some fish and have now introduced some meat occasionally. I thought fiber was supposed to be terrible with Tykerb. What do you think about the FAT issue in food that U of Chicago has done their study on? Says it increases the absorption of Tykerb with food. MJ

Actually - we should all steer clear of sugars as much as possible, but that's another debate for another day - occasional desserts (especially dark chocolate, right girls? LOL) haven't been a problem for me. I eat a little bit of oat bread about 4-5 times a week, and it's not a problem. It's the white flour and high fructose corn syrup and transfats and processed foods and fast food stuff and fried food that really causes the problems. Excess fiber is not a good idea if you are having diarrhea, but once your body stabilizes, the fiber is not harmful. I believe it would be wise to NOT take that study too seriously as it is only theory at this point... the meds that we take have not been studied in that context and dosage... so there is no guarantee that you would get the proper efficacy from them. The point is that we want them to work as efficient as possible because this is our lives we are trying to save/lengthen. If you research it a little further, you will find that Glaxo Smith Kline scientists responded quite detailed in opposition to that theory.

I agree...My diet low sugar,dairy(dark choc. of course!) white flour, meat ..no processed foods! Also many small meals! So far doing well on Tykerb.

Sorry, I was vague on that posting...I do eat a small amt. of Dark choc....Also I have organic yogurt every morning with fresh fruit!

me too - Wallabee yogurt every morning with banana/apple/kiwi/blueberries/cantaloupe, etc etc

Hi great supporters,
I still cannot find where I put in a new thread. My MRI was very good, no new tumors, no increases and some decreasing. Now I need to know about if it seems effective (TYKERB) on lungs liver and bones.?? Also, no one talked about the blood work, does it cause a decrease in WBC's or RBC's? Have not heard anything aout that.
My PET is Tues. so we will see how the METS look now, since May.
Thank you for all your info. It is really a blessing to me.
Mary Jeanne

What are the side effects for the blood work when on Tykerb? WBC and RBC?
 

I am still looking for a way to submit a thread. Guess I am just useless. Thanks. MJ

MJP - when you click on the Herceptin/Tykerb forum, look towards the top of the page right underneath (Herceptin / Tykerb - Share your experiences or ask questions about Herceptin or Tykerb). There is a blue button that says "NEW THREAD" - click on that and you can start a new thread, titled with any title you think will draw attention to your question...
Hope that helps. YOU ARE NOT USELESS! Geez, don't make me kick your booty...

Anyway - Tykerb does not typically affect your blood count directly when it comes to RBC and WBC, it is typically any chemo that you might take with it that can run down those counts... That said, I have been on Tykerb with the chemo, Xeloda, for 15 months and have strong and normal RBC and WBC. Xeloda does not beat up my blood system at all.

My doc has told me that if we are to get results from PET, CT or MRI that shows anything new in the body or the organs, then we will add Herceptin in with my Tykerb (and I assume I will stay on the Xeloda as well, but maybe not.) I think the direction of thinking these days is that combining the targeted agents (Tykerb/Herceptin and maybe pertuzamab, the new one they are working on) is the possible key to closing all the pathways {especially and including HER1, HER3 and HER4} that HER2 cells use to escape. A combined approach of these targeted agents is suspected to hopefully put HER2 into submission. We are all hoping so. But they have figure out how to combine all three together in a way that our bodies can tolerate... but for now, we have only the first two, Tykerb and Herceptin, so that is what they are trying on some of us who progress beyond Herceptin/Chemo. That combo is showing some promise at this point... but research shows that we probably need a third agent in the combo to seal the deal... And so it goes.

Let us know what your scans say.

gamma, Proton etc from Hitch
 

Did you receive my reply to your thread???MJ

yes - proton is not the road we would take anyway. We will do SRT or Cyber if we ever need to do radiation...

thanks for your info!

Brenda (Hutchibk)