HERCEPTIN and/or PERJETA Threads
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thanks bstein
The perspective of others is so important to me right now as I try to weigh up my return to work options.
Fantastic neee on your clear scans
Liz
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Any US ladies ( and gents) seen the story coming out of a New York college? A study shows that chemo can induce cancer spread?
Don't mean to be alarmist. It has hit one of UK's tabloid newspapers today. (Daily mail
L x
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bstein--- thrilled with your fabulous news---have been following your posts for a long time it seems--best wishes for a long and happy life to all our BC sisters!! Cyber hugs--
Stephanie
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Liz, a quick google search brought me to this article: http://stm.sciencemag.org/content/9/397/eaan0026
I haven't had the chance to read the whole thing yet, but from the abstract I'm guessing this is the study your papers were referring to
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First off, thanks for this thread! Your dedication and updates have kept it alive and helped many people share their stories. I've read through 10 pages already, but I plan on going through all 50+. With respect to the article about 'chemo making cancer spread stronger', I also read the article. I'm not sure I give much credence to it, though I'm not sure if it's just wishful thinking or coming from a place of rational thinking. Chemotherapy has helped so many people, and while it doesn't help everyone it would seem strange that this was the first we've heard about it. There are many other excellent studies going on how about immunotherapy, cancer stem cells and gene switches though... given more time I'm confident that scientists will solve the mystery and until then my fingers are crossed.
My wife is starting her treatments tomorrow and I plan on giving everyone here her updates (she's obviously given permission). Glad there's a discussion to join. I plan on updating as much as possible.
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I also read that article and it does seem to suggest that there could be a downside. Imagine a future where no chemo was needed anymore!
But for now, we do it. Benefits for me far outweighed the risks.
I did 6 rounds of TCHP and my tumor that was the size of a golf ball was zapped - complete pathological response. So, was it the herceptin/Perjeta or that in connection with the chemo? Who knows, but I'll take it.
Jackboo - has your tumor reduced enough that they can attempt a surgery? I remember a while back you saying it was close to a major blood vessel? when is your next scan to see progress
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Hi GLim
Glad you have found the thread although I didn't start it.
I only mentioned that article about chemo because it hit the British press that day and I don't buy into it without reading more extensive research.
Hi livebig my tumour has shown a good response by halving after 3 THP. I have 2 more tx planned before remaining on HP. Surgery not possible and I fear even radiotherapy unlikely but will know more next week.
Thanks for all encouragement about HP success. It helps those of us who are on various points of this journey.
Liz
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Hi all
After 4 THP my oncologist wants me to drop Taxotere due to concerns over neuropathy.
I will continue on Thur with HP and begin ovarian suppression tx.
My lifetime dose has been 10 treatments and down the line all further tx can impact on nerve damage.
He said my response was excellent so far and there isn't much left: 1.1cm after 3 treatments. There may be rads to come too.
So I'm happy but wondering if I'm making right decision????
L
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I think if you get the desired response sooner rather than later, that's great news! With the onc on board, I wouldn't worry, I'd celebrate
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Hope so lillimae. It's that magic NED! Will I get tgere
Won't be sorry to leave chemo as this fourth cycle has been tough and recovering has taken longer.
Not easy decision though.
L x
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Jackboo, I was in a similar situation. I could only take 9 of 12 Taxol treatments because of neuropathy. This was 7 years ago, and part of my hand is still numb. I continued on Herceptin and do just fine.
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Hi Linda
Thanks for your reply. Did you have weekly Taxol or every 3 weeks
I'm so pleased you are doing well after 7 years. A real inspiration. I start HP in a week's time along with a Zoladex injection and I presume at some point an AI.
Also looking into cyber knife.
I really hope to achieve NEAD. 1.1cm left!!!!
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I had weekly Taxol. I started tingling in my fingers around week 7. After week 8, my hand was numb, and I was pulled off in week 9 before it could move to my feet. I still have temp sensitivities...it's hard to tell when something is cold or hot. Herceptin was/is my wonderdrug. Perjeta wasn't even on the market when I got sick. I had the Lupron injections, and just decided to have a hysterectomy since Tamoxifen was screwing everything up.
You'll get there!!!!
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Thank you livebig. I feel happy with the decision after giving it a few days to consider. I am struggling to get to sleep a little now and have cramps in my left calf muscle due to the neuropathy. I am hoping it is " safe" th stop with only s little bit of tumour remaining.
My next step is to see how soon I start to feel better and what to expect from my first HP without steroids of course???
L
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Hi again everyone
I was just wondering what I can expect from the first HP without the chemo.
I'm having trouble with a runny nose and red eyes. Both of which I remember when on Herceptin only 6 years ago
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My experience is that SE improve in the months off chemo.
I have some SE for approx 5 or 6 days post infusion. Usually a bit of headache, tired feeling and drippy nose. Nothing stops my daily activity though. You should find it MUCH easier than THP. I do occasionally get nauseous BUT I just take some deep breaths and eat something small. Again, this is usually first few days after infusion. Diarrhea can be an issue for some. If you had it with THP then it will still happen but it should be less. If you have not experienced it before, it likely won't happen.
You will find SE similar BUT it should become more mild. It can take a couple of months for the chemo but HP is easier for sure.
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Hi Mara
Thank you for that advice.
The big D, reflux are an issue I'm afraid.
I'm struggling with whether dropping the T after 4 is the right one. My anxiety has increased since this decision was made and now I have my first Zoladex injection to come.
Fun, fun, fun...
Hope you are doing well and thanks again for your input.
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Bear in mind that the reflux and diarrhea should become less bothersome or go away. The T chemo is destroying all of your gut Flora which will made food and bathroom issues worse. HP will not destroy the gut flora the same way since it is only going after the HER2 protein. I would be shocked of you did not see improvement. I take rabeprazole for my reflux and enjoy 2 containers of probiotic yogurt everyday. I take 1 immodium the day of and one day after HP to avoid diarrhea. Have not had the big D since November.
Regarding your concern about stopping T. I had to stop when I started THP again in Nov after only one infusion. I am currently NED and have never had mets in my body. My brain tumour was the only met so HP is quite an effective treatment. Neuropathy can last a long time so if that is an issue, I would not push it myself. Neuropathy can be extremely difficult to live with.
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Hi Mara
I am hoping that my GI issues will get easier. For me I have had my worst bouts at about 8 days out with one episode striking in the middle of the night and with trrrible abdom cramps. This time I may try taking Imodium proactively.
Dropping Taxotere is a big decision and I have been quite tearful over the last few days. I'm sure I will start to feel better emotionally when I start feeling better physically.
I am delighted that you are NED and like you say this shows that HP does a great job.
Best wishes
Liz x
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Liz- So sorry you're struggling with your decision to drop Taxotere. You've had a wonderful response with THP thus far, so I very much hope H&P will get you to NED. I started Zoladex last week. It wasn't the most pleasant injection (honestly, the numbing medication injection was worse than the Zoladex though), but I haven't had any issues so far. Stay strong my friend. Thinking about you!
Mara- Thank you for sharing regarding H&P side effects. I had my 6th (and final) TCHP infusion on Thursday, so my next in a couple weeks will be H&P alone. It's so encouraging to know that future infusions will have fewer SEs.
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Hi Erin
You are very kind. We are at a very similar point now on this journey. You have done incredibly well. Thanks for the head's up on Zoladex injection. I kind of thought it would be horrible. I already have nightly blood thinning injections which also sting!
Oh well I suppose it is once a month. ( think that's right)
My periods have stopped ( I am 47 in 2 weeks time) so am hoping the SEs are not too bad. I could really do without this but then I tell myself that it is another weapon in my arsenal!
Mara and everyone else: I echo Erin's comments about helping HP newbies.
L x
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Hi: Just finished my third cycle of Taxotere, H&P and I'm having major issues with diarrhea. Tried all OTC, then MO put me on octeride (pill) and now Sandosatin (injections). Have tried food (BRAT diet, all carbs, everything).
I know treatment is helping as I'm not coughing as much but these GI issues (which last from day after treatment to three days before next) are really messing with me. Anyone else had this problem?
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KarenBinETN, sorry you are having to take meds for diarrhea. That is rough and probably has more to do with the Taxotere wiping out all gut flora as it is helping destroy your cancer.
Only suggestions I have if you have not tried it is to increase soluble fiber so that things get bulkier. This can actually help with diarrhea symptoms and sometimes abate them. Another thing I like are raspberries. They are not bad on the GI, in fact, being an alkaline food with lots of fiber will help if your symptoms include reflux type issues which was a big problem for me. Another thing to try is probiotic yogurt to try to get some of the good gut flora back. I DO NOT recommend supplements while on chemo as I knew someone who gave themselves a blood infection taking too many probiotics while on chemo. I would stick with food rather than supplements while on chemo or ask the MO if they can recommend anything. The fiber should help calm things down. Though not advisable with diarrhea caused by an infection, fibre should help ease the GI. Good luck to you.
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Hi all
I am jumping in here with a question that does not follow the recent topic of side effects. Hope that's ok.
In brief, is there anyone who went on to achieve NEAD whilst on HP on going. That is my hope right now. I was advised to drop T after four cycles of THP due to the onset of neuropathy.
My tumour ( internal mammary) was 1cm after 3 THP cycles. I will be scanned again Aug 29
Liz
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Jackboo, I have been NED from the neck down for a couple years since 2015. I finished chemo the first time and completed year of H only. After brain met scans, have been on HP 9 months and still NED from the neck down. It would have taken care of my brain, but it does not cross the BBB. Read my signature, only had THP once. Please try not to worry. It can be very effective without chemo. Good Luck.
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Hi Mara
Thank you for your post. I do remember your situation, especially the issue with T toxicity.
My concern is partly based on the fact that rads is still a NO at this point because of position. However if I have further shrinkage it will be looked at again at the end of Aug.
If it is at all possible I would like to have rads. My London oncologist recommends it and it is in line with some doctors who advocate aggressive multi modal therapies for oligometastic disease.
Still it helps to hear stories of those who experienced further reduction on HP alone. 1 cm and counting......
Liz x
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Hey,
Mo told me the same thing, I made it through 6, then just went to HP .
I think tatxotere is nasty.
Paula.
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Hi Liz. I'm one who not only didn't finish taxotere (after 3 treatments) but also had to drop perjeta after just 6 months. At the time I still had tumors in my liver. Herceptin alone has brought me all the way to NED. I should also add I did not have a mastectomy or rads. Stage 4 at diagnosis
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