TRIPLE POSITIVE GROUP
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Hi Newfromny, for me with each infusion I got different SE. I would say #3 and 4 were the toughest. I had an allergic reaction to taxotere during my third infusion and I think that just put me down for the entire 3 weeks. #4 was better but I started to develop neuropathy in my hands. I was pretty discouraged after #4 but my OC had ordered an ultrasound which showed one tumor was gone and the other had reduced by 65%, so it was worth it. The 5th infusion was actually much better, I was tired but the other side effects seemed to be much better.
It’s tough but I know you can do it. There were times I wanted to hand in the towel but then you get through the crappy days and feel better which renews your strength to continue on.
I wish you the best, you can make it through this. This site and group have have really helped me continue through this process. We are here for you. Let me know if you have any other questions.
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Hi MACTAZ thank you so much for the encouragement it means so much tonight, just when I’m wondering how I’m going to make it through 3 more rounds. I’m having an ultrasound next Friday and hoping for the best. Looking forward to the better days I know they will come
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I wish you the best on your ultrasound. Let me know how it goes. Stay tough, cry and bitch if you need to, it helps me feel better.
Take care and hugs 🤗
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Ya you got this, girl. Go outside at some point and get your heart rate up a bit, grab some fresh air. That and the cannabis got me through chemo for sure.
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xyoungandscared my MO told me at my last visit that my aches and pains are most likely from arthritis and not the arimidex and that I should see a rhumatolgist. I am 56 and have never had this joint pain. I said to him, and what do I do when the rhumatolgist says, those pills you are on cause joint pain. Should I have him call you to explain that to you? He switched me to Exeestane which ive taken for 6 weeks now. I have worse joint pain, gaining weight and higher BP so I told him I'm switching back. I just washed my hair and it's completely see through on top and now creeping down the back. I hate the side effects from these pills and I'd love to switch MOS but I'm on my second one already. The first did a sonagram and mri after chemo and said cancer was all gone but when I had my lumpectomy, there was enough cancer still present that they didn't even get clean margins
I had no faith at all in him then.
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LTWJ ... I hear you. Been there with the side effects from AIs. Had a month of hell on the generic Aromasin to "prove" to my insurance that I could only tolerate the brand name.
I know this is very geeky but go to https://dailymed.nlm.nih.gov/dailymed/index.cfm.
Type in your drug and start studying the manufacturers. Look for the INACTIVE ingredients. I copied them by manufacturer and put the lists into an Excel Spreadsheet. Then I looked for what was common and what manufacturer has the fewest inactive ingredients. Actually, I color coded them which made it easier to follow.
I bet you'll discover what might be a better manufacturer to use.
Best wishes.
Vicky
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Vicky that is a great suggestion. I use the site but didn’t think about do8ng that.
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I have been very fortunate to have an MO who is very responsive to my aches and pains - sometimes even sooner than I would. I'm happy on femora and haven't even noticed the manufacturer. My joints actually feel better than pre-BC. I think it's the claritin and more exercise, especially walking. Without many diet change I've even lost a few pounds. MO is helping me find something that will reduce the hot flashes so I can wear a wig to cover my thinning hair (although I love the hat collection I am accumulating.) Please, remember you are in charge and are entitled to find a doctor who listens to you. I too assume this will be a long term relationship and want to be happy in it and not just settle.
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MACTAZ, just catching up here, regarding your post about measurements of shrinkage after TCHP and timing of surgery, things vary from person to person. First, 4 to 6 weeks until surgery sounds normal. The time will allow you to recover a bit from chemo and get your platelets back up. Of course, the wait is tough because neoadjuvant for a triple positive is a kind of torture. The waiting game creates anxiety. And if you are part of a chemo group, most everyone has already had surgery and the pathology that informs their treatment. Neoadjuvant is like flying blind.
As for the PCR, like you, I had imaging which showed some shrinkage. My final pathology after surgery showed no tumour or DCIS. I was multifocal. Your report may show a PCR and it may not. For triple positives, a PCR is generally a result that is not expected. I am guessing your MO was pleased with your progress so far. Keep moving and up your nutrition if you can to get ready for surgery. I wish you all the best.0 -
xyoungandscared, very sorry to hear about your pain and your MO’s reaction. Every ache and pain can drive one down a rabbit hole worried about progression. I have many strong NSFW terms created for the estrogen blockers. During chemo, I had traveling pain popping up everywhere with no rhyme or reason. My MO always has the same reaction to pain. Is it persistent and recurring? Random or very specific? I keep a log of pains and their timing, level and duration. If you can, keep a notebook of these pains which you can show to your MO. Yes, that might sound ridiculous. My log gives me piece of mind and a record like that is hard for an MO to ignore. I hope things improve for you. Hang in there. It does get better. You are still in active treatment and recovering. It’s a lot to deal with.
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Suburbs, thanks so much for your insight. You are so correct, many on my chemo site have gone through surgery and very few have similar DX so you do let that get into you head. I will be continuing with HP every three weeks so that has reduced a bit of my anxiety. I have read that T+ BC had fewer PCR than others so tried to be realistic about outcome, but sometimes that optimism creeps in. I think that is ok as long as I don't let it effect me negatively if I don't get the results I'm looking for.
I now have firm surgery schedule and while nervous I'm looking forward to getting through this. I met with my PS and had a good conversation on expectations and will meet with BS next week.
I do feel like things are moving forward. And being through with Chemo has really given me a boost.
Thanks again, I just don't know what I would have done these last 6 months without this site and all the great women who offer their support and insight. 😘
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I have not posted often or recently but have continued to read every post since I joined this past spring. The information and support is so helpful. I'm now past surgery and chemo and have completed 9 of 30 rads. I have developed a nasty case of laryngitis that's not getting any better after a week. I've asked if there is any chance it's being caused by the radiation. Therapist doesn't think it's likely. I'm wondering if anyone has heard of this happening?
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Hi all, I am a new joiner to this group having found out post-BMX many new things from the pathology. First, an unexpected finding of IDC (not found in 3 biopsies which only found multi-focal DCIS), and then had a 2nd surprise which is a positive HER2 finding for that tumor.
I'm still recovering from the BMX so my MO doesn't anticipate starting chemo & targeted therapy til after the holidays. I'll be getting 12 weekly Taxol treatments plus 12 months of Herceptin which sounds pretty standard for this pathology.
It seems like many of you had chemo before surgery though, vs after, or is that just the most recent posts maybe? I'm still researching a lot on what all this means and aside from being thankful Herceptin was developed, I expect this group and the Taxol chemo group will be important as I cope with the next stage (to think I was focused on implant size and the exchange! Who knew those were happy days...😀).
How did everyone cope with the weekly Taxol and Herceptin for a year - it all sounds pretty scary. I'm checking the chemo threads for any tips to stay as strong as I can during the months ahead. I'm also planning on doing cold capping as I've heard it's been pretty effective with Taxol - have any triple + ladies done it? Paxman/Dignicap or manual?
Thanks for this & I'm glad we are all here for each other!
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I believe neoadjuvant vs. adjuvant chemo has to do with tumor size and stage. Taxol is sometimes referred to as "chemo lite"--usually not as bad SEs as some of the heavier-duty chemo drugs. That said, it is pretty rough on your hair. I read a lot of stories from women who did cold capping but only had limited effectiveness with it so decided not to even try. I also didn't ice my hands/feet--just made a point to wear sandals (although I was getting tx over the summer) and didn't use any of the warming blankets that were offered. I figured if the point was to keep your extremities cool, I could do that by keeping my body a little cool through tx. I ended up with only minimal neuropathy on the bottoms of my feet. I have my next Herceptin this Friday--I'd say I feel a little off for a day or two but really not bad.
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Hi keepmovin. Glad to hear from you. Perhaps the radiation thread might have some perspective. I hope this resolves for you soon. Someone here who has done radiation might respond as well
Boogirl, welcome and sorry you have to be here. Changing planes in the middle of a trip is unexpected, but, I hope we can help. Generally, Herceptin only for a year in well tolerated by many. You will have to have your heart function, LVEF, checked every few months. The taxol part will be tougher. Good luck with the capping. It’s one thing I wish I had taken more seriously. Loss of hair was a big part of chemo and wearing a wig for a long time is something you will be happy to avoid. Again, welcome.
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Hi ladies.
Sorry for being MIA for awhile. Took a little mental vacay! I've been very moody lately and thought if I backed away from all cancer related info and such I could regroup in my head. So here's an update.
I've been having horrible headaches. And forgetfulness, spacey, confused and just plain clumsy. Had a brain scan, ALL CLEAR , but why all the SE? Changed when I took my meds, no difference. Asked about different manufacturers have 2 different ones to try. So I thought I was bringing all these SE on by worrying. Took a 1 month leave from work and all cancer things and guess what FELT FINE. Crazy how mind can do that to you.
I had had another lipo and fat grafting done. 3rd time. My PS wasn't happy with my new boobs. Lol. Ok..... this time the donor site was upper thighs. OMG. Talk about pain. And bruising. My legs are so colorful.
Welcome to the new ones. Sorry you are joining us. I have missed too many posts to respond to but please know I had read each one. Send sending each of you all my love.
Hugs
Shellie
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boogirl - Ingerp is correct that the decision between adjuvant and neoadjuvent chemo is usually determined by stage and tumor size. For Her2+ patients it has become much more common to have neoadjuvent chemo if Perjeta is prescribed to be administered with Herceptin. Perjeta was originally approved for early stage use in Sept of 2013, for tumors 2cm and above, and it was required to be given neoadjuvently as part of its FDA approval. Prior to this it was far more common to have surgery first. I was treated prior to 2013 so I had surgery first even though I had a 2.6 cm tumor. Most tolerate Taxol well, the most notable side effect is neuropathy. Be sure to notify your oncologist if you experience tingling or numbness in extremities - most commonly hands and feet. Some people ice to help prevent this and also to assist their fingernails and toenails, but if you cold cap icing hands and feet might be too uncomfortable.
shela - hey girl!
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boogirl ... Welcome. Sorry you find yourself here.
I cold capped. My success was such that my center bought the machine! My husband froze individual caps and brought them in on my treatment days. Had we known "freeze" meant colder than our freezer, I probably would not have loss as much hair as I did from the first round. All the other rounds he used dry ice. Make sure your hair is cut short, damp, and change the part from time to time. There is a forum for cold capping on BCO.
Check WhippetMon's forum on BCO for understanding your implants and what to get. She is a genius with implants.
About chemo ... looking back after 16 months out, I don't remember that it was "that bad." The mind works in works great ways ... it just take some time to get thru it and over it. You will never know how incredibly strong you are until you complete triple positive breast cancer treatment. I promise one day you will reflect on all this crap and say "Dang, I am one awesome person!"
shelabela I posted this last week: Go to https://dailymed.nlm.nih.gov/dailymed/index.cfm.Ty... in your drug and start studying the manufacturers. Look for the INACTIVE ingredients. I copied them by manufacturer and put the lists into an Excel Spreadsheet. Then I looked for what was common and what manufacturer has the fewest inactive ingredients.
I am convinced (without researched proof) that the inactive ingredients cause my side effects. The most common for me were those ingredients containing some form of lactose. I know the experts say that it is not that much and I only have my experience. Once I move away from those manufacturers with the most inactive ingredients containing lactose, my SEs subside.
Vicky
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coach - my experience with anti-hormonals follows yours as well - the fewest inactives were the easiest for me to tolerate. I took three different brands of letrozole and two of anastrazole over the almost 7 years I took these meds. The brand of letrozole that had the least of the typical side effects was the one wit the fewest additives - it had even less than the brand name. Unfortunately, that pharma company (Roxane) merged with another (Westward) and stopped making letrozole altogether. I ended up stopping anti-hormonals and Prolia injections per my MO due to some recent dental and jaw issues, but interestingly feel no different than when I was on them - which probably means that some of the relatively minor side effects I had attributed to them were ones I may have experienced anyway due to advancing age. For many the SE are sudden, new, or really debilitating so it is obviously caused by the meds - if that is the case, I would recommend trying different brands until you light on what works, it really can make a huge difference and allow you to continue with that aspect of recurrence prevention.
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thanks Vicky. I will check it out.
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I didn't ice my hands or feet during TCHP. I just took my shoes and socks off and held my water bottle. I have Raynaud's so I figured my hands and feet would be sufficiently protected. I have a bit of numbness in my toes and fingers but not the horrible, painful neuropathy some get, and hopefully I won't develop it in the future.
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Boogirl, welcome. I'm getting taxol weekly for 12 weeks + herceptin. I had surgery first. I'll have #6 later this week and it hasn't been too awful, at least compared to what I expected and what I've seen my sister go through with ovarian cancer. I ice my hands and feet because I'm very worried about neuropathy, but doing the cold capping felt like too much. I had my husband shave my head last week after my hair starting coming out in large amounts and this weekend I had a bunch of angry, itchy bumps appear on my scalp. I have a call in to the nurses, but it seems like it's probably folliculitis. Ugh.
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Boogirl, I have a similar story. My pathology was HER2- until the lumpectomy and then it showed up as being both HER2+ and HER2-, which can happen. I had already met with the radiology oncologist and was ready to start rads the next week when it all came to a halt and now I'm about to have my 10th round of Taxol tomorrow. It was depressing, but in hindsight I am glad that they found it. Had they tested another slice of my tumor, they might not have found it and I wouldn't have treated it. Taxol and Herceptin does seem like a crazy long road and I guess it is in some ways but the SEs have not been that bad, more annoying than anything. As I'm nearing the end of Taxol treatments, I am so much more tired than I was in the beginning, but I'm still working and doing all the things so it's manageable. You are stronger than you think. I trust that you're having a port placed. My port makes me so happy and I am so grateful for it every week.
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Hi Boogirl! I am exactly 4 weeks out from my last of 12 taxols/herceptins. And tomorrow I'll get the 2nd of my every-3-weeks-for-a-year herceptins. I've had zero issues with either so far. I did not ice and had no neuropathy. I cold capped (paxman) and lost MAYBE 5% of my hair, if that. At this point my eyebrows do seem like they have thinned out, but so far still have them.
I was terrified of taxol after reading these boards, but I think I must've been reading posts of those who'd had AC first. Looks like taxol alone is pretty easy, at least in my case. I'm 11/20 radiations now, and, at least so far, that's been a breeze too. Just soooooo thankful for those that have gone before me and paved the way....!!
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I didn't do the cold capping. but iced my hands and feet during Taxol. I had neuropathy pretty bad (burning) in the feet, but it actually got better towards the end of Taxol. I said to my MO I feel like I had gotten used to the weekly dose. Now 2 weeks PFT I feel it very mildly. My nails are nice and pink.
Need some advice regarding osteoporosis. I went for a bone density measurement last week and they found out I have osteoporosis in my spine! Bummer!! The scan was supposed to be just baseline, before I start an AI. Well, I just cried and cried. I thought I might have a bit of my old life back, I used to ski and skate every winter and we just got snow... and I wanted to go skiing before my BMX in January... now, again, a big chunk of my life taken away from me. 😞😞 Ehm, well, self-pity aside. I am meeting a doctor (the one for the osteoporosis, I have no idea what is he called) this Wednesday, because the measurement was done by a technician. Is there anything I need to discuss with him?
And is there any hope regarding osteoporosis? Or will I face a steady decline??? I have no idea... no-one in my family has this, not my mum or my grandmother... I feel so young for cancer and even more so for osteoporosis...
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JaBoo,
I developed osteoporosis while on Aromasin + Zoladex and was deemed to be at high risk for broken bones. At first, my oncologist prescribed me Fosamax, a biophosphonate. Then, she figured out how to get my insurance to pay for Prolia, so I'm on that now. Yes, there is hope -- I believe that Special K recovered her bone density while on Prolia. I will be having another dexascan soon, and will see whether I've regained my bone density then.
Since being diagnosed, I really haven't changed my lifestyle. I still scooter with my kids on concrete, though I do so carefully. Of course, my favorite exercise activity is swimming; not much danger of breaking bones doing that.
Fosamax was OK; it was weekly, and I had to remember to take it right after getting up and then wait awhile for it to be absorbed before I could eat and take my other meds. Prolia is a shot you get every six months -- it is more expensive, and my insurance would only pay after I'd tried something cheaper first.
Hope this helps!
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jaboo - don’t cry, my friend - there is hope for recovering bone density. There are a number of bone strengthening regimens available and it is common for breast cancer patients to need them. There is an added bonus of creating a less hospitable environment for bone mets by taking them also.As ET indicated I did receive Prolia. I was osteopenic prior to my breast cancer diagnosis due to an early hysterectomy and oopherectomy, and likely a propensity based on meeting other physical criteria. Chemo and six months of anti-hormonals pushed me from osteopenia to osteoporosis. After four Prolia injections I had restored density back to a normal measurement. That is an exceptional response. During the time I was on Prolia I dropped the hood of my car on my hand, it was injured but no broken bones, got my arm caught in a moving clothes dryer, no broken bones, and tripped over my maxi skirt in the kitchen and fell on a tile floor, no broken bones, lol! Graceful and coordinated - not so much!! That said, I did stop this year at the direction of my MO because I had been on it for six years. He wants a bone density scan in January to assess after being off for a year. I have also been taken off Femara because of recent dental issues involving bone loss under a crown, an extraction, and a bone graft - so, not sure how this will go yet. The oral surgeon is confident that the dental issues were not caused by either drug, but I can’t be on them until the conclusion of that treatment.
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JaBoo ... Cry your heart out and then make a plan to beat this!
My bone density has improved also! I had a baseline before diagnosis. Since diagnosis I have had two Prolia injections and daily 2000 - 2400 calcium meds. I read in another forum where a survivor improved density overall but loss density in her arms so she started using hands weights. Her experience led me to use an elliptical vs a treadmill.
Like Special, I fall also. Saturday I fell over the dishwasher door. Nothing serious from it.
You can do this. It will just take a plan and determination on your part.
Vicky
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coach - too much gravitational field around us...lol! Glad you're ok!
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Thanks Ladies so much! I feel a little better reading all your experiences and tips. I'm worried about bone loss too! I am pretty active and ride horses, and giving that up would make me cry too. It's great to see there are remedies for many of the SE's of all of this. I'm seeing my MO post holidays and my list of questions is refining daily from all the great info on BCO. I've had a lot of success stories on the cold capping so I'm definitely trying it. I have a touch of Raynaud's as well so the thought of it getting worse worries me but I'll take it all as it comes I guess! I'm looking forward to when this is all a memory too (especially these salad bowls - cold winter chills have taken on new levels with these TE's in place. Yikes! Every winter wind feels like a dagger even with my layers. I keep trying to tell myself feeling anything is a good thing, even if the feeling itself is bad....).
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