Neoadjuvant TCHP - Post Results Here
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i had a sentinel node dissection and the node that was positive pre-chemo was clear post-chemo so no nodes were removed besides the few samples they took. it was a relief as it would mitigate the onset of lymphedema. i also had a pathologic complete response. it was a great feeling after all that chemo.. MRI was done today and i am still cancer free since november, it was a sigh of relief but i can't help but constantly think about the need to mentally prepare myself for the potential of it coming back.. hearing it's gone just isn't enough for me... i just feel it will always come back and that i need to be mentally prepared for it.
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runningcello I feel the same way, and I am sure we are not alone.
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I have a cel number for my MO to use in an emergency. I can email his assistant who will pass on questions, etc. I don't really like calling people, so I'm not sure how easy or hard it is to get a hold of my MO by phone, really. I prefer email, and working through the assistant seems easy enough. Both my MO and General will phone me with test results. My last healthcare provider didn't allow direct communication (although if you somehow managed to find out which phone numbers worked, you could get around that). They only allowed contact through their website, with messages (KP). Now I have a PPO and individual doctors and they seem a little more easy to contact. But I would guess I'd probably have to go through nurses most of the time...
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I really like my MO and surgeon but I HATE my RO. I'm participating in a study of proton therapy for breast cancer patients so for the sake of future patients I will stick with her but she and I are not a good fit at all.
Did I mention that I decided to stop Herceptin after 16 doses instead of the standard 18? I was having a lot of pain in my arms and legs that was getting progressively worse after the 15th and 16th doses, it was hurting day and night and interrupting my sleep. My body was telling me to stop it and I felt like it was working against me instead of helping. All evidence is that my cancer has been gone since last May/June (my final dose was July 2 and an MRI that week showed totally clear except for two nodes that had scarring).
The standard of 18 doses is being tested in New Zealand to see if they can do less treatment and a small study in Finland showed that 6 months might be enough treatment.
I told my MO that if we just looked at my allopathic care, we added in Zoladex for ovarian suppression and did 7 doses of Perjeta instead of 6, so I did do more on top of the recommended chemo, surgery and rads. That wasn't even taking into considerate all the complementary care that I added on myself with naturopathic medicine, Chinese medicine (herbs and acupuncture), massage, and nutrition.
I started chemo almost a year ago and I am still low in zinc, iron and magnesium so I've still got a bunch more healing and restoration of my body to do.0 -
TCHP 6 rounds - pCR
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I like my MO, thank goodness! I switched insurance so that I could go with him... and he's an hour from my house, so I'm staying up with my sister, who lives nearer. He was my outside 2nd Opinion, and immediately said: neoadjuvent TCHP, whereas my original MO was OK with neoadjuvent TCH, but claimed he'd never heard of Perjeta!!! Although he totally switched over once he got the written 2nd Opinion! I think the Perjeta was just too expensive for my original insurance... and he needed a reason to be able to prescribe it (the outside 2nd Opinion letter). SO that made me lose faith in him and my original insurance!!!
Anyway, I'm just grateful to have a MO who isn't bound by costs, and insurance that is PPO instead of HMO. And grateful for the recent Obamacare Open Enrollment with no bar to those with Pre-Existing conditions!!! I would be so screwed, insurance-wise, without that. I'd have had to stick with my old HMO and be fighting for every little test and prescription all along the way.
Anyway-- I saw a surgeon... He said it looked like my tumor had shrunk from 3cm to around 2cm... (I'm on round 4 of 6 chemo). He said it looked like a lumpectomy would be no problem (whew! I have small breasts and old surgeon said that might be a problem). So I'm to have another MRI at the end of chemo and see the surgeon again... I can't wait to end chemo!!!! I've still got 2 weeks of IV drips to do on this cycle, and then one more time... It's a real pain. I can't get enough exercise and can feel my legs getting all wobbly! It's terrible. But hopefully I can get strength back afterwards...!
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Hi April--seriously, how scary is that, MO "hadn't heard of Perjeta"?! If it's the "game-changer" that my BS made it sound like...that is almost criminal that he wouldn't be up on things!! Thank goodness YOU were and were able to make the switch. I suspect most people, being shocked and overwhelmed with their dx, would find in too daunting to contemplate switching insurance at that time.
Glad to hear your tumor is shrinking! Good news!!
I have just recently noticed a difference when I go upstairs...my legs feel kinda wobbly, and I can feel my heart beating. I don't have an IV so there is no excuse for me to not get on the treadmill! (except that I have zero motivation...) Maybe with the spring like weather, that'll help! --Lorie
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P.S. April....I knew about Perjeta before my consultation with BS because of your conversations with SpecialK! So when I found out I was HER2+, BS was telling me about new drugs that were available with neoadjuvant tx...I said, "is one of them Perjeta?" I gave an internal sigh of relief when she said yes. (I knew I'd be looking for a second opinion if she said no!) So thanks to you and SpecialK!
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loriekg -- This discussion group is SO important, isn't it? SpecialK totally helped me out as well, with all her information! --It's great to know that the info and discussions are helping out. I'd have been a bit worried that Perjeta was too experimental or something, only people here were so knowledgeable about it and all the information pointed to it being exactly what I needed.
Of course, I still wasn't sure--I was ready to hear what my MO suggested, and he sounded sure with his TCH treatment... I asked about Perjeta (because of SpecialK and others who had been doing it here)... but he said he didn't know anything about TCHP! (just TCH). But I gave him the benefit of a doubt UNTIL I got a second opinion from an outside MO who immediately said TCHP! That made things fall into place for me... I mean, neoadjuvent TCH suggested by two MOs... and added P by the one (who was recommended to me as a 2nd Opinion)... plus everyone here who talked about Perjeta... Then the first MO agreed to the Perjeta after getting the letter from my 2nd Op MO... so that was pretty much everyone in agreement--only I had lost faith in the first MO because he claimed he didn't know about Perjeta, then switched instantly when he got the 2nd Op letter! That was just too freaky for me. (People were hinting to me that some places discouraged Perjeta because it was more expensive! Yikes!) And I was lucky that there was Open Enrollment going on... even though I had to switch after my first chemo! It was very strange, but at least I have trust in my MO. He's a great guy--always at the office, always instantly suggesting tests and extra prescriptions that might help out... (He's got me taking L-glutamine to make sure I have no mouth-sores, and I never have had them, although my mouth was tender during the first round with my first MO... He got me doing the PET scan and MRI, which my first MO said I didn't need or want...)
It's important since I'm relying on him for recs for the surgeon, etc. He's really great, though, and I've liked everyone he's recommended so far. The BS is a guy who pioneered SNBs. He's older, but he definitely seems like he's a confident guy and knows what he's doing. After all the uncertainly and insanity at the beginning, it's a total relief to have things fall into place so nicely now!
Anyway--best wishes with your treatment, loriekg!
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Since my last post on 1/1/2015.
I finished chemo on 1/20. The last couple of rounds of chemo, I did increase my fluids and I started making sure I was taking vitamins. I also drank smoothies with spinach/kale, carrots, mango, berries, cherries, almond milk, and greek yogurt. My energy levels came back more quickly by adding in the extra nutrients. My nails are still a mess, but I started taking extra biotin and it seems to be helping with nail and hair growth.
I had surgery on 2/25. I never had a lymph node biopsy, so they removed axillary nodes during surgery. They were 0/8. I thought it was a lot, but they can't put them back in now. The Great news was that I had a complete pathological response to the tchp. They did not find any cancer left. This was great news. In addition, I found out last week that because of the complete response, the radiation oncologist said no radiation. My MO and surgeon said I was in a gray area with the radiation because of my tumor size and the complete response. I was not looking forward to radiation, so I'm glad to have some more good news. Also, I had some kind of fibrous, non-cancerous mass that had started growing in my right breast during chemo - so glad that breast tissue is gone. While I was hopeful for a complete response, I was not expecting it. I will still be continuing with herceptin until September. On to reconstruction. Good luck to all of you on here.
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indyaskye -- Congrats on the great response!!! Nice that they thought you could skip radiation, too!
Hmmm... couldn't they have done a Sentinel Node Biopsy on you? Or was there some sign that you might have lymph involvement before chemo, so they went straight to the axilliary nodes? (I have no idea about the processes... just curious.)
I think I will get a SNB when I get surgery... It's not clear yet... have to wait until I see the surgeon after chemo ends and he has the MRI results, I think...
I hope your nails will be OK.
I still have my nails (5th cycle), but I hear they can still have problems after chemo...
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Indyaskye, you got my attention with the no rads. Is that common with a complete pathological response? I am one week after my 3rd TCHP infusion and I nor the MO can feel the tumor anymore. My boyfriend asked the question if I may be able to stop after 4 infusions. MO said he would decide after the 4th. This 3rd infusion has been the worst wih fatigue and loss of appetite. I'm so ready for it to be over. Then the idea of rads has me worked up already, though it seems most say rads is easier than chemo. Would love to hear of others that have gotten to skip rads.
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SugarCakes - my MO would not let me stop chemo early because of the HER2+. And you are ER/PR negative as I am so there are really no other follow up treatments. So because of HER2+ and the size of the recurrence, the whole tumor board met & recommended I have rads after surgery. I suspect it also depends on what residual cancer they find during the surgery. I didn't have a pCR so I had to have another round of different chemo drugs after surgery even though the BS was sure she got it all, and of course then rads, but only 5 weeks. You are right tho - rads are MUCH easier than chemo.
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Guess I'll jump in here.
I had TCHP too. Finished back on Dec 26, 2014. I wanted to comment on the rads--to do them or not. I had a complete response to my treatment. I had a "lumpectomy", but really, there was no tumor to remove, so they too a margin of tissue where the lump had been. They removed lymph as well. All biopsies came back with zero cancer cells. I questioned whether I needed rads because of this. My labs were so clean at this point that the pathologist that was running the biopsies called my surgeon to ask if he had the right tissue, or if maybe my diagnosis was a mistake or who knows what. Anyway, I was still strongly advised by my whole team of doctors to proceed with rads because of the chances of recurrence with her2+. To put in my notes about Herceptin, I had to skip one month due to some heart difficulty, but I'm back on track now. I started seeing a Naturopath too. He switched my CoQ10 to a type call Ubiquinol that is supposed to be more effective. It has been a great help. On regular CoQ10 I was still having heart palpitations 24/7. The Ubiquinol has brought my heart back into better function.
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I love seeing all the pCR reports! I know the MO community is very excited about the good results with TCHP too. Even though it kicked my butt, I am so incredibly grateful it is available to us.
SugarCakes: What good news about the tumor. Yay! The treatment is hard--hang in there! I had pCR and still went forward with rads. I don't have any skin issues yet. The hardest part so far is going in every day. I do have some chemo SE recall--nausea and funky taste sensation--at the end of each week. Things seem to resolve over the weekend, then start up again the following Thursday. It could be a psychosomatic response..?
TCHP is still a relatively new treatment for early stage HER2+ cancer. It will be very interesting to see what the standard of care becomes with TCHP and pCR results..
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They don't know yet what a PCR with TCHP means but earlier studies of neoadjuvant treatment, including some Herceptin, PCR show that there is still a higher risk of recurrence if the patient is:
Younger
HER2+
Had nodal involvement
I had proton therapy for rads. Bad reaction, blisters, wet and dry desquamation. It's 3-1/2 months later and I'm having to do a lot of physical therapy, chiropractic, and lymphatic massage as rads set off a bunch of issues, including reactivation of two prior whiplash injuries. I hated it and I suspect in time they will figure out that even those who started with locally advanced disease can skip rads if they can figure out a way to gauge responses to neoadjuvant treatment.
Rads wasn't a piece of cake compared to chemo, it should also never be described as "well tolerated". A better description would be "reasonable toxicity given the statistical reduction in local and regional recurrence".
I hated rads.
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agness--I feel like you. I have four rads left. Hating it. Worst medical experience of my life. In addition to bodily discomfort (understatement) it has triggered PTSD related to traumas in my past. I have barely made it through and I hope it was worth it! I would rather nail my foot to the floor every day than do rads. I'm sorry it was so hard for you too. I hope you are continuing to heal.
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Hi everyone! I am happy to have found this forum and particular topic discussed. Next week I start 4th treatment of chemo (out of 6) Neoadjuvant TCHP. I am triple positive. I was worried about starting chemo, but so far almost no problems with it, any SE have been very mild. After the first 6 weeks of chemo saw the oncologist who manually measured and said my 4.5 cm tumor had shrunk in half! So, I am hoping this continues, praying for the best for all of us!0 -
Great news, TexasToast! It's always good to hear positive outcomes like that!
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april25 - they did do a biopsy during surgery, but still decided to remove more. I think it had to do with the lymph node mapping and that the dye went to many lymph nodes quickly. Also, my MO was concerned about spreading even though none of the tests showed anything positive in my lymph nodes. He was concerned because my lymph nodes in my groin and collar bone area hurt after my biopsy, not my armpit. My PET scan showed uniform activity throughout my bone marrow too and that may have concerned him also - but I have Crohns too so my immune system never works correctly. The RO said that the PCR, the removal of so many lymph nodes that were all negative, and continuing herceptin through August helped keep me from requiring radiation.
sugarcakes - I have no idea if it is common to not have radiation after a pcr. the tchp is a fairly new neoadjuvant therapy. All I know is that it is a gray area with a large tumor size and a pcr. Hang in there with the chemo, it sucks. Also, my mentality with the chemo is that it only takes 1 cancer cell left over to start again. radiation prevents local recurrence, so my RO didn't think the benefits of radiation outweighed the risks. My family keeps asking if I need to keep getting the herceptin. I say yes as I see it as preventative and/or finishing off all those random cancer cells that may be left. The herceptin only treatments are so much better. I still don't like going back in every 3 weeks, but I haven't had any side effects that are noticeable. My hair and nails are growing back. I am getting my energy back too.
So, I don't know how many of you have kids or have watched finding nemo, but my thought process through all of this was "just keep swimming, just keep swimming, swimming, swimming." So don't give up
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indyaskye, I been thinking and reading a lot and my mind is more ready for all six infusions and ultimately, radiation. You're right. It's all about doing what I can to prevent having to go through this again. I have TCHP no4 on Monday. Though no3 kicked my butt, I am again ready for Monday to get here.
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Sugarcakes--Way to go girl! You can do it! And when you get to the finish line you'll be happy you did. I haven't had any regrets. I'll be thinking strength and positive thoughts at you on Monday.
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Anyone watching the documentary "Cancer: The Empire of all Maladies" ? Part two aired last night and the last half hour focused on Dr. Dennis Slamon and Herceptin.0 -
Glad to hear you are going to give it all you've got SugarCakes! I tell you, this past round (#4) hit me harder than the others. Not so bad with the diarrhea or nausea, just felt so much more tired. Going up a flight of stairs and I feel like I just ran up 5 flights!!
TexasToast--no I didn't watch the documentary. I would like to see it though, but I have just felt way to emotional and shaky to try and watch right now. I'm afraid I'll will hear something that will haunt me and I won't be able to shake it off.
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Sugarcakes
Hang in there!! I had 40% shrinkage after 3 cycles. I am done at #4. I see my SO tomorrow about surgery. Do not have date yet. Stay hydrated and manage your GI system the best you can. I still have numbness in heels and toes, fingers are better. Nausea gone after 2 weeks although taste is way off. Fatiqued easy but can walk a couple blocks.
You got this!! #4 almost history!!
Hugs to all!
Patty
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SugarCakes: I echo Mombie..You got this!! I am glad you are throwing everything at it. I feel the same way. I DO NOT want to do this again. Take time to enjoy the good days and be gentle with yourself on the rough days. We're here for you.
Lorie: The exhaustion hit me harder the last few rounds too. I remember the challenge getting up the stairs! Now, I jog up just like I used to. In fact I take the stairs over the elevator any time I can because I am thrilled I feel strong enough to do it.
Texas: I want to watch the documentary, but I am not sure I am ready. I have just started to let myself imagine a cancer-free future. Like Lorie, I don't want anything to frighten me back to my scared place..
Hugs to everyone!
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Oh, yes, the leg pain and fatigue! I had almost forgotten about that. Just going up one flight of stairs could be a little grueling. Now I walk everywhere, with no issues.
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Yesterday when I was having one of my Herceptin only infusions, a gal stopped to chat with me. She went through all of this back in 2005. She was her2+ and took Herceptin. She's 10 years out and her onc just told her that she doesn't have to go in for checks anymore. She just has to see her primary care person for routine stuff now. I just wanted to pass that on. It made me happy to meet someone who is ten years out and going strong!
Just to chime in on the leg pain comments. I do still have that. I'm seeing a Naturopath. He is trying to help me find some better ways for pain management. Just changing my diet and cutting out most sugar has already helped.
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I didn't read Emperor of all Maladies when I was in active treatment for the same reason some of you aren't watching it, but have read it since and it's fascinating. Since the documentary is on PBS, you should be able to access it in the future when you feel ready.
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Is it worth the read? Or is it more of what we can learn here and on the net? Someone at my treatment center recommended it to me today too.
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