TRIPLE POSITIVE GROUP
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Morrigan, For my first round of TCHP, I got really bad chemo rash on face and neck, and my MO decided to remove the perjeta, and while i still get a rash its about 80% less and a lot more manageable.
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I guess the rash is just a normal side effect. I can live with it, other than the hands it doesn't really bother me.
I swear that list they go through before Chemo doesn't cover half of the side effects.
Ah well, I'm almost done, just have to keep reminding myself of that. 😃
Thanks for the feedback!
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morrigan - not only did the list not cover all the side effects, many times I would bring an SE up to my MO's nurse or NP and they'd tell me it wasn't chemo related. But I'd come here or post about it on my chemo thread and turns out it was not even uncommon. I think I got all the weird SEs, but nothing was too severe. Chemo for me was like a thousand little indignities.
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Morgan and Hapa....I laughed out loud at your posts...yes to all the weird side effects! And our minds are so full of information, it’s not like we would probably remember anyway! But I love these forums because it helps e immensely to know I am not alone! Eri
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Hi SpecialK
Thanks for your suggestions. It’s all moves in a very negative direction in last few days. Phone call two days ago had us going in for an hour-long heart ultrasound of the heart. Results back the following day showed she has a dodgy valve in the heart. So they have stopped chemo. Doc said she didn’t want to cure one thing to create another problem.
So mum has been put on Letrozole and is to have an operation in SIX WEEKS! This I am not happy about. We just want this tumour out NOW! But oncologist says the Letrozole is very good at suppressing or stopping the growth of the cancer. I don’t believe this. I know they’re short of anaesthetists because that’s what she said in day one!
Mum also has to have this operation done under local anaesthetic because of the valve.
She’s being referred also to a cardiologist and oncologist said that they might replace the valve then continue with the chemo. But she thought that chemo would only ever give a small benefit??!!! Weird when only a few days ago we were being told it was the gold standard treatment!?
So all in all I’m deeply worried and very upset that my mother is not getting the best chance here. Covid is causing a whole load of cancer treatments to be postponed and put off even over here in the UK.
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Dolly - I tried to go back in your posts without much success so ignore me if I missed something. Certainly cancer in the age of Covid-19 is a challenge. I think the moderators have a link/note specifically for the newly diagnosed. Herceptin, which is the gold standard in the states for HER2 positive, can cause heart problems. I got an echo every 3 months the year I did it. With your Mom's heart complications, I can understand the mixed messages you feel you are getting. It's sort of "what to do first" and whether the cancer or the heart condition needs to be addressed in what order, particularly when hospitals are juggling patient care. (That sentence is jumbled so I hope it makes sense). I know of no magic answer. You are clearly a caring and concerned daughter and she is lucky to have your attention to these complicated issues. Stay close and we will support as much as we can.
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The skin toxicity showed up on my face, neck, hands and arms up to my elbows. It itched and burned. Putting my hands in water was excruciating. My MO called a dermatologist. They had me use aquaphor plus a prescription cream. This lasted the entire time I was on taxol and cleared about a month after I had finished. It looked like a cross between measles and poison ivy.
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Taco,
Thank you so much for that lovely message. I’m glad to be on here to learn from you all and to feel so very supported.
The good news today is that i have spoken again with the oncologist and my mum will be getting an appt arranged for surgery next week. I had written to numbers of people yesterday and made a proper nuisance of myself!
My mum is much happier knowing that she’s going to be operated on.
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Wonderful news! It's sad but we have to be our own advocates and really push for what's best (for us). I'm glad they listened and you got a surgical date for your mom
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Hapa - I love that phrase "a thousand little indignities." Describes this exactly! Hope you are doing well!
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Help! I haven't had a period for 3 years (since chemo) and today it showed up!!! Nooooo! Now what?
Bird
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Vicky, Special K, and Tres, so happy to see theses posts about ovaries, etc. I’m bleeding heavily since Friday so I’m concerned. OB scheduled for May 15. Haven’t bled for 3 years. Crossing my fingers it slows down.
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Hi Everyone,
I am on 8th cycle pf pacs+herceptin, so far its very tolerable. But there is another problem. My CA 15-3 tumor marker was already high at the beginning of my chemo, and every 2 weeks it has been increasing, 33-->34-->39-->48. It seems to be increasing fast and its worrying. My CT SCAN was clear before I started the chemo regimen, anyway next week I have been used to do a brain MRI (with contrast) and PET SCAN as well. Has anyone else been through this increasing tumor marker during chemo period?
Vijiya
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Vijaya, I had tumor markers CA15 and CA29 in the 50s, and considered low. I was told they were not usually taken and were done on accident because with TPBC, for some reason they don't tell much and if something was wrong they would be in the hundreds or thousands. I went on to have all the scans and everything came back clear. Hang in there!
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Thanks Kim (I am sorry if I am calling you incorrectly and if you don't go by Kim).
The Dr did not seem worried if somehow my baseline was supposed to be high, she seems concerned that it is continuously going up. I guess its another week of anxiety for me
thanks
Vijiya
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going to add another question to the list. My MO never mentions tumor markers or kidney function when checking my blood.
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vijija, yes I am Kim. Try to search this Triple positive forum for CA15, I asked the same question last fall and I believe it was Special K who answered me with great knowledge and links to the studies and research done.
Morgan, TPBC usually do not have tumor markers done and your kidney functions are done every blood test with the CBC and Comprehensive blood tests. I believe its the BUN and Creatine shown on the lists.
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thanks a lot Kim
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another question I have...has anyone stopped pacs+herceptin midway to do AC or FEC? I was just wondering if my scans next week shows mets, would I have to change midway to a different chemo regimen
Thanks
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Tumor markers are done by oncologists based on philosophy. They are not recommended for early stagers in the ASCO and NCCN guidelines, but my MO does them for his patients. I had markers in the normal range, for a cancer patient, at diagnosis and shortly thereafter, but mine rose during chemo, and were double the high end of the range by the time I was done. Inflammation can skew these tests and I had a lot as a result of chemo - rashes, swelling, etc. It took about 60-90 days, but the marker (CA27/29) did return to the range. This is one of the reasons some docs don't use them, and they are not a universally reliable indicator - even in some with mets.
morrigan - as kimmh says above, if you are having a CBC and CMP done, your kidney function shows on that CMP as noted above, and also the eGFR result on the CMP (Complete Metabolic Panel), which is tied to kidney function. You should be having both of these tests done during chemo because they are the only way your MO will know how your kidneys and liver are doing - which are the two avenues for elimination of the drugs. The liver results they usually track are AST and ALT. It is common for all of these to be somewhat off during chemo, then return to normal results range as you get further out from treatment.
vijiya - what type of scans are you having?
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Thanks for the response Special K.
I will be doing a PET/CT SCAN, a Brain MRI and also an ultrasound on the neck that's showing some swelling. The tumor marker that is rising for me is CA 15-3, looks like my onco only does CA 15-3 and not CA27/29
I am assuming the PET/CT SCAN is to primarily rule out bone mets and brain MRI is because pacs/Herceptin does not seem to be effective on brain tumors. But I doubt its brain because I did have a regular CT SCAN of the brain prior to starting chemo and it looked clear. I am hoping this is all just chemo creating havoc on my body...will have to wait a week to find out
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vijiya - hoping your scans show nothing of concern, I know it is nerve wracking, I had a pre-chemo PET and one post-chemo, but had surgery first. Is your neck swelling on the same side as your port, if you have one? Could be a culprit. I believe that nuclear bone scans and MRI are used more frequently when looking for bone mets, and PET/CT used more often for soft tissue mets like liver/lung/other. PET/CT relies on absorption of the glucose/nuclear tracer and I am not sure how much bone lesions take that up in the short time between injection and actual imaging (less than an hour), so may not be as effective an imaging modality for those areas. Because PET/CT is an overlay imaging it may though. You are right about Herceptin and chemotherapeutic agents not crossing the blood brain barrier, and this is because the molecules are too large. The good news is that several newer drugs have a smaller molecule that can penetrate and have a positive effect on Her2+ brain mets, Tykerb and Nerlynx. Hoping all you are dealing with is side effect and nothing beyond that to worry about. I have a good friend who is BRCA1+ and had triple negative breast cancer and was treated at my same center, but by a different physician. Her doc uses 15-3, but mine uses CEA and CA27/29. I believe these markers are somewhat interchangeable but look at different antigens in the blood. Elevated values can be a sign of problems, but can also be a sign of inflammation - lets hope for that, right?
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Thanks for the explanations on the blood tests. I will ask anyway since they never really mention anything. Once they talked about my Carboplatin dose being based on age, weight and kidney function so I'm guessing they have it covered.
Vijiay - best of luck! I hope it turns out OK
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morrigan - If you are interested in tracking your blood test results they should be able to print them for you after each result - usually the CBC is an instant result since they need to know your blood counts before they ok your infusion, or they can also make them available on a patient portal if your center/hospital uses one. My portal has the additional capability of reading the labs as a graph over time, which was helpful in seeing trending.
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Special K,
I am so impressed with how much you know about these stuff. Thanks!!!
Let me ask about the nuclear bone scans with my Dr. The neck swelling is in the same place as the chemo port. Good point.
Vijiya
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Morrigon, mine either. My MO rarely does bloodwork.
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Sadly, my place isn't very tech savvy, although they're doing fine on the teleconferenceing part. They don't have a portal. Not sure I need to see a print out but, at least now that I know about it I can ask questions.
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Hi guys,
I’m back from a hospital visit today where we had huge conversation with docs about my mums BC.
They had refused to operate immediately because it appears she has a swollen breast due to blocked lymph node. He said they can’t cut into that until the swelling goes down and so letrozole is the first treatment to reduce this swelling.
Has anyone here experienced this?
Mum is then to have a heart valve replacement and then they’ll review the chemo option. If still no chemo then they will operate as long as that swelling is gone.
If the Letrozole does not reduce the swelling then they’ll go directly to Rads.
Mum is much happier just knowing there is an actual plan.
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Having a plan does relieve a lot of anxiety and stress. At least it did for me. Good luck to your mom!
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Hello everyone, I just started zoladex,letrozole, and kadcyla. Not feeling too great. Having a really hard time sleeping and increase in anxiety, probably due to changes in hormones and constant hot flashes at night.Any suggestions on managing side effects? Pharmacist suggested gabapentin. Does it work? Worth taking some more meds? Thanks so much!
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