HERCEPTIN and/or PERJETA Threads
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Liz,
You can definitely hope for reduction. Thp could get rid of it completely. I had 2 large liver mets ( 4 cm and 11 cm) . After 3 or 4 treatments of t & h , I had a scan. The small one was gone and the large one had shrunk significantly. I took breaks alll of the time for vacations ( also have 3 kids). Of course, if yourscans are showing reductions it is an easier choice to make then if a treatment is not working. I have been Ned for over 6 years now and stopped h & p over 2 years ago and on no treatment. My kids were 8, 11 and 12 when I was diagnosed with mets. They are now 14, 17 and 19. There is hope!
Laurie
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Hi Laureish
Wow thank you for your post. I have just had a lovely, sunny day with my family and yet it's so raw this dx that its always there.
Just logged on and saw your post! Thank you. My boys are currently 16 and daughter is 14. I want to be their mum for as long as possible.
Congrats on your amazing NED and treatment experience. I keep thinking it's one 3cm lesion at the moment, even though it is in mediastinal nodes.
Come on Taxotere: be truly terrible to this beast! Do you mind me asking about hair loss Laureish?
To cold cap or not to cold cap- that is the question
Thanks again my friend x
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jack boo I felt really good! Better then I had in weeks because we went on week three instead of getting treatment. Returned and continued taxotere, H&P round 6 back then! Was worth the time with my family
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Bstein
Hi again
It is encouraging to hear that you were able to plan around your holiday. 6 years have passed but I remember feeling pretty good around the week 3 point. I'm praying I handle it well as I believe my onco wants me to do more than 6.
Icing hands and feet- how exactly did you achieve this. I will be trying cold cap. Is this a waste of time with 8/9 treatments do you think
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I have no neuropathy after 8 rounds so I think it's worth it. During taxotere I had a foot sized bowl/bucket for cold water where I put ice in so it would stay cold. I took my feet out from time to time if they felt too chilly. My hands I used two of their specimen bags filled with ice I slipped my hands in to the outer sleeve so not right on the ice. Cold water would have been better I think. Sucking on ice was tricky with my hands tied up so my husband, mother or daughter would give me them. That hour was torture but worth it.I talked too much once and never sucked on ice and my mouth really did taste more like tin.
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Hi Bstein
It sounds like you went all out to really prepare well for this treatment. I am just googling methods now eg socks etc. Space was an issue at the chemo centre I attended.
All worth a try but clearly a lot to cover and an uncomfortable hour.
Getting scared as each day passes but you are proof that it can be done. Did it help reduce taste loss as well then
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Lauriesh, thank you so much for sharing your experience. I always tear up when people post their hopeful stories. I'm only 8 months into this experience, so uncertainty looms large.
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Hi jackboo09 When I went to Spain in July 2015 I went between treatments. (3 week window). To date I have never missed or pushed out any of my treatments and I don't think I would or could!! I was scheduled for 6 taxoters but because I was reacting and tolerating it well I ended up with the nine. I had 20 tumours between both lungs and they are gone but the tumours in the bone and hip are still there but have not increased. Everyone responds differently to treatment as in reduction of tumour etc or with side effects from treatment. I remember being very scared at the start of my journey but many of the people on these threads gave me hope, hope that I too would respond to the treatment like them. Best of Luck X
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Hi FM508
Thank you for your encouragement about how effective your tx was as I get closer to starting mine.
I think we will postpone the holiday as I want to try and get through the treatment before Autumn begins.
Has there been any evidence about having more than 6 Taxotere at Stage 4 or is it just a case of keep going if it appears to be working?
Liz
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Hi everyone - a new development and minor bump in the road. After getting a shoulder MRI we learned that what we thought was a shoulder injury is probably pain caused by several tumors in my shoulder joint and humeral head. Most likely these tumors have been there since my diagnosis 2.5 years ago, but have mutated to become resistant to H&P and have begun growing again. For now, however, they want to neutralize them with radiation (and reduce the pain) and keep me on H&P (whew!). I should have 70% pain reduction in a month, and then go back to Physical Therapy to improve range of motion.
I admit that this makes me nervous and it makes me wonder what is going on with the tumors in other places, but I'm glad to be able to stay on H&P for at least a little while longer. Tumor markers remain low and so far the only new pain is in my shoulder. I had a brain MRI last night because she wants me to get them yearly now. I'm hoping it comes back with that magical word "unremarkable".
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Shutterbug, sorry to hear about your progression. Hope that rads takes care of any pain and stops the growth. Thinking of you.
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Shutterbug I am sorry to hear your news. Radiation will kills those mutants. Stupid cells, just die already. I only have liver mets (well who really knows) and will have 5 rounds of targeted radiation to the three tumours there starting this Wednesday. Hoping no more mutant cells have drifted away. I to continue on H&P.
Radiation worked for you in the past, right? No reason to think it won't be a complete success
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Thank you txmom and bstein. I do have confidence that the radiation will kill the mutant cells. My radiation oncologist is wonderful and I trust her completely. I'm so relieved to stay on H&P.
bstein - I looked back at some of your earlier posts on the liver mets thread to see what type of radiation you will be having. I hope it all works out well for you and you can stay on H&P too. Wishing you an early Happy Birthday!
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Shutterbug7, am so sorry to hear your news, since being diagnosed metastatic in 2015, I have always taken great comfort from your posts. It is at times like this that we must dig deep and remain positive and focused. Please God the rads will zap any loose cells and as Julian of Norwich said "all shall be well and all shall be well and all manner of thing shall be well". Thinking of you and wishing you a successful outcome. xx
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Shutterbug -
So sorry to hear about your bump in the road but let's hope it's just that. I'm glad your doctor is allowing you to stay on H&P. Since you're ER+ are they planning to give you anything that might fight that part of it?
I actually was on another thread and saw somebody mention the same exact thing (they thought they had a shoulder injury and it turned out to be mets). I'll try to find it again. I have actually been having shoulder pain as well and think it might be a shoulder injury from playing volleyball but it makes me wonder. Did these shoulder mets never show up on a CT or PET scan in the past? Were the doctors surprised that it had not? I had a PET scan about 9 months ago but perhaps I better have my shoulder checked sooner than later.
Wishing you the best as you go through radiation. Please keep us updated on how it goes.
Josalive
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Thanks FM508 and Josalive. FM508 - I'm so touched to hear that my posts have helped you. I haven't been on the boards much lately...too busy with Facebook, I guess.
Josalive - I am on Tamoxifen for the ER/PR+ part, but I'm very minimally ER/PR+ (5%), so the H&P are doing the heavy lifting. I asked about shoulder mets in a Facebook group and a woman kindly sent me a message that she had radiation to her shoulder and got about 70% of her range of motion back after rads and a few weeks of Physical Therapy.. That really lifted my spirits. I'm getting to the point where I'm tempted to cut my hair because it is so hard to style with one hand. (Grrrr. I just got this hair!). The first CT I had mentioned mets to the shoulder as part of the "widespread" bone mets, but they didn't list how many or the exact location. My doctor looked at my CT from February and didn't see anything obvious, but apparently the shoulder MRI was a different position, and the radiologist called out the exact locations within the joint and the size of each. I haven't actually talked to my oncologist yet because I had set up my last appointment with his assistant (thinking I wouldn't have anything pressing to talk about). I hope you get your shoulder issue straightened out and hopefully it is not cancer related.
One more day of radiation! I'd definitely in the "pain flare" phase and it is keeping me awake at night, but I remind myself that it means the cancer is dying. Take that cancer!
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Hi, this is my first post at this forum even though I have been lurking here since diagnosis of State IV last September. I am 46 with young children. Mine is in the subtype of Her 2+, Er-, PR-. Metstatic to lungs and lymph nodes.
I have been on THP since October 2016. Finished nine cycles three weeks ago. My scans after nine cycles showed that all lung nodules are cold now, some disappear on CT, some are smaller, three axilla nodes are also cold after treatments. CT and PET Scan reports do not tell how many nodules are left, I only got the description of "Multiple Nodules" in the beginning of the treatment and now "Several Nodules" on reports, radiologists(different person each time) never bothered to give me a count, not even the estimated count of nodules. Pet and CT are not consistent in the size of nodules either, recent Pet scan still identified the largest being 7mm(unchanged from six month ago), recent CT report said all nodules are sub 4mm. Recent CT and Pet both identified this lymph node on my neck something to watch, Pet showed this one with SUV 1.8. Two Pet scan in the past three months also found mild uptake in the right lingual tonsil, with SUVmax of 2.7. I am going to follow up with a neck and head doctor on these findings at my request to my Oncologist. She does not think it is necessary to do a biopsy on the lymph node at neck. She never gave me a NED status, but she still thinks I am not complete remission because of the nodules in my lungs on CT. She does not seem to be concerned too much on the lymph nodes at neck though.
The sides effects of Chemo have been very tolerable, with the main side effect being fatigue for a week after each chemo, I have chemo induced anemia, red blood cell count is a little low, but never too low to postpone the treatment.
I need some advice if I continue chemo or stop chemo and continue H&P from this point? I have not seen anyone in this thread did more than 9 cycles of THP. My doctor asked me to decide myself. My children are still young, so I definitely want to be aggressive as possible, that is why I did 9 cycles instead of typical 6-8(all my lungs nodules and axilla lymph nodes have shown to be "Cold" at scans after 6 cycles). My oncology said there is no study to show continuing chemo would help with the outcome at this point, but she also pointed out the original CLEOPATRA trial, there were patients receiving this THP combo up to 40 cycles, but she does not know if the patients receiving more chemo is better off than those receiving less.
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If you are not having heart issues, and you are covered, the H & P would usually continue until you had progression The chemo is usually dropped once the cancer is brought under control after a few cycles. taxol/taxotere generally going between 6 to 8 cycles, H and P continuing after.
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if you are tolerating it well, I would continue on for another couple rounds and then scan again.Do you have neuropathy?
If you do, it is more likely to become permanent the longer you stay on it.
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She says she is Stage IV. Normally, you receive THP, Taxol or Taxotere plus Herceptin plus Perjeta first to stabilize the cancer. After some cycles, the chemo is dropped (Taxol/Taxotere) but the patient continues on Herceptin and Perjeta until there are heart issues or progression. This could mean years on Herceptin/Perjeta for the Stage IV gal.
That is why it would be different than if you are earlier stage cancer and they are trying to cure. On Stage IV, we are on drugs to try to keep the cancer at bay, not cure it. The treatments don't stop for us unless we get progression or health issues from our treatments.
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But if she is tolerating the taxotere and she is not Ned, she could continue on taxotere if she wants to. She doesn't have to drop it. That is what she is questioning, if she should stay on the taxotere along with the h & p.
Cheesyfroggy, I was diagnosed with mets at 42 and had 3 young kids. I did 7 taxotere and had to stop because the side effects were too bad. If I could have, I would have stayed on it longer.
Lauri
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Hi Mara,
I have what may be a dumb question: why wouldn't they try and cure a stage four, Her2 patient? I understand that such people have had their disease cured (see Barbara Bradfield, for example--one of the participants in the first Herceptin trial. She had liver mets and is alive and well, twenty plus years later). Why just try and keep the disease a bay?
Thanks for any nsight you may have!
Stephanie
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I don't have Neuropathy yet. But I am debating about continuing with chemo because I am psychologically tired of chemo and look forward to having my hair coming back and I don't know long term damage of Taxotere on my body, will it make me and my immune system weak? But in the same time, if there is proof that it is beneficial to have additional chemo at this point, I am willing to continue.
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the only way to see if it is beneficial is to scan again after a few more doses and see if you have continued regression. If you need a break, I have seen women who had continued regression on h & p alone.
I was treated with curative intent. After chemo, I had one liver met left. I had ablation which got me to Ned. I did a her2 vaccine trial and continued on with h & p. I have been Ned for over 6 years and stopped all treatment over 2 years ago.
Lauri
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Good points from both of you and certainly do appreciate the feedback.
Certainly a patient's wishes must come into play and hopefully her onc will be able to explain her options.
For myself, my onc is the one who has told me that Stage IV is not at this point curable. She has said when being treatment, we are normally treated for the rest of our lives. I am currently on H&P and I am also NED. No mets in my body but taking the H&P in the hopes that I can keep mets out of my body. Only had the one met in my brain which was surgically removed and radiation already as well. So I too am NED but continue the H&P and it is also very effective at keeping out the mets. Obviously, I don't speak for everyone's experience or what treatments they discuss with their oncs. I am going with my own experience as well as experience from others on BCO.
Cheesy, if you want to continue treatment including Taxotere, of course you should bring it up with the onc. Good luck on what you decide. Just wanted you to feel confident on H&P. It can be very effective in holding things steady or preventing new mets from coming without the extra SE.
LauriSH, glad to hear you have been able to maintain NED without being on treatment. I was never ever given this option. I was told to expect to be on drugs forever. I am glad is different for you.
Stephincanada, normally Stage IV is not treated with curative intent. The chemo is usually not as strong since we sometimes need to be on it a LONG time. Everybody is different, and yes people are living longer. 20 years sounds wonderful. I would love to be at that point myself. Fingers crossed for us all to be NED and stay that way.
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Hi ladies
Jumping in here as I am at the point where I might get answers to the number of Taxotere tx.
I start THP on 26/4. I too have been given the impression that chemo is weaker as I won't be having nulasta shots. This is because Perjeta has an effect on WBC as well as the Taxotere. Going to question weaker chemo as so far I have loco regional disease in mediastinum. This may change with today's PET scan as last CT was 5.5 weeks ago and if it's lymph node involvement, maybe that's worse than an organ?
I too have been told not curative but will pursue rads if possible and all aggressive treatment. My onco said the THP would give me my best shot so if you are tolerating it well then coming off it is a big decision.
Please keep us posted and I will try and ask these questions to my onco next week.
P. s recent brain scan clear.
Liz x
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Thank you ladies for all your input!
Made the decision, called my doctor requesting to add Taxotere back to the order, continue for another three cycles. I am going to have my 10th chemo infusion today at 3pm. It is hard to know God's plan for me, but the fact that I had minimum side effects from Chemo and my hair has amazingly started growing back a little bit after 8th treatment might be the sign that he would love to see me continue without fear. It just felt right and peaceful after I made the decision. Exactly five years ago, I was diagnosed with DCIS, very extensive, almost entire left breast. My then surgeon and oncologist recommended Mastectomy surgery only, my second opinion surgeon felt that I should do chemo followed by surgery because of the extent of tumor. I was totally scared by idea of chemo and went with the easier option, surgery only. None of them tested my Her2 status though, so I did not my Her2 status five years ago. I regretted the decision that I made five years ago and hope that I will not regret a couple of years from now when there is a progression.
Emily
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Emily,
I wish you luck as you continue with the Taxotere on THP. I am at the start of this journey having recently been dx stage 4.
I can only hope for tolerable side effects. I had my PET yesterday and goodness only knows what will light up. I've been warned it can show lots!
6 weeks ago bone scan was clear, brain scan is clear. CT showed mediastinum 2.9cm tumour.
Last 2 days I have a puffy lymph node around jaw area though. Had terrible pounding sinus pain around nose 2 days ago so hoping its that.
This disease keeps on throwing stuff at me to play with my mind.
The chemo may well be awful but this lot hasn't been a walk in the park either:
- Chest/abdom/ pelvis CT- parasternal mass
- CT guided biopsy of chest mass
- Bone scan- clear
- Hysteroscopy for thickened womb lining
- Brain scan- clear
- PET scan- awaiting results.
All in 6 weeks. Brain and PET within 24 hours.
I'm broken with the tension before I even start and now the jaw swelling.
Sorry for the rant
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Hi, Liz:
I hope you had good results from PET Scan. I wish you all the best with your incoming treatments. I found TCP combo very tolerable. My first one hit me the hardest, and as it went by, it gets easier and easier until approximately 7th treatment, I started to feel very tired for a few days after infusion, then I felt completely normal for a couple of weeks and it was time again for another cycle. Everyone reacted to this combo differently, I felt blessed that I had not experienced too much side effects. I hope the same for you. I had been doing this fasting thing, no food for the day before chemo and the day of chemo. It seems to help minimize my GI side effects, most of cycles, I felt just a little nauseous for a couple of days. My RBC has been lower than the normal range, but WBC has been okay with or without Nulasta, I had Nulasta in the first 3 cycles and it gave me some strange body ache, so I stopped Nulasta completely.
Emily
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Hi Emily
Great to hear of positive experience on THP. Interesting point about diet before chemo. I'm not sure I could fast but was thinking of a lite diet with soup and lots of water which I'm gradually trying to build up.
Ioana- will follow supp thread at some point but enough to handle right now.
Mindset- I'm lucky to have the support of the BC nurse from my original hospital who has pledged to stay with me despite moving to York. She spoke to me yesterday and said I had a lot more to give to society and we spoke about me doing a phased return to work. It made me feel a bit more normal that chat, bless her.
This time round has been harder, but when I really think about it the process is the same. I feel I have to get this bit out the way, hope for some stability ( NED of course would be the ultimate) and try to regain my life whilst remaining on tx. Others I believe have done exactly this.
Thanks again Cheesy- fab name! Jack boo is mine. Nothing too clever really: first born's name and boo is his nickname. Poor child!!!!
Liz
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