Taxol and Herceptin only for stage 1 HER 2 positive?
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SpecialK,
They tell me my white count is perfectly normal but we shall see on Friday when I go in. Since I am not running a temp and have kept in the same range of feelings ( not feeling worse) my guess is SE. Hopefully , I'm right.
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Sulfa...when you start herceptin alone, watch how you feel. My first two times was infused in 30 minutes. I felt awful for the better part of a week to ten days. I mentioned it after my second one, telling him I felt worse with just herceptin every three weeks than I did with the chemo blend. He slowed it down to 90 minutes and it made a huge difference.
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Thanks Maggie and Special K.
My concern is that I need to select my chemo regimen, which starts in a week and a bit. My MO wants me to do a very harsh regimen that consists of about 4 medicines and herceptin and the only other option is Taxol/Herceptin. She mentioned that the Taxol/Herceptin may be less effective than the other one, but she' fine with my initial decision to do it. As you can see by my stats below (thanks Special K) - that I have a small tumor with no nodal involvement! Similar to most women on this thread who are doing Taxol/Herceptin.
However, I noticed on my pathology report that LVI is positive/observed. My MO didn't mention anything about that when I was with her, but of course I googled it and it seems kind of scary. Some doctors don't pay attention to it and some say it puts you at higher risk of recurrence. So, I am looking for some help and what better place than the thread for Taxol and Herceptin. Any stage 1 ladies that don't mind sharing their LVI status and whether you still did Taxol/ Herceptin? Whether you discussed this with your MO and if it has any effect on recurrence and does Taxol/Herceptin take care of any possible increased risk from this? It would help me to feel comfortable with going with Taxol/Herceptin.
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Curious- I'm not sure why your doctor told you it would be less effective, unless just based on LVI status. I'm sorry but I don't have any information with regards to LVI. I'm still trying to understand why my surgical path report from Juky says DCIS as the diagnosis when clearly it has to be IDC.
Here for herceptin today and genetic testing. Ugh. I haven't started tamoxifen yet. I'm going to try it and see how it goes. I'm only 15%ER+ and terrified of the SEs of tamoxifen because of my sensitive to hormones. Hope everyone is doing well
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carm - I have never seen anyone choose a chemo regimen based on LVI, rather it has been a choice of chemo or not, with LVI being a factor for doing chemo. I wouldn't personally be worried about whether taxol would be strong enough. The concern with LVI is that it is an avenue for cells to escape - taxol is systemic treatment designed to treat that. I would assume it would not be offered if your MO didn't think it would work
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CuriousCarm - I have LVI and my oncologist went with Taxol/Herceptin based solely on the cumulative size of my tumors and negative nodes. He did not seem that concerned about LVI when choosing my regimen.
BB
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Daniella -
Can you provide more insight into your "genetic testing"? I remember you were questioning parts of the treatment plan.
Oh, and thanks! Your shared thoughts in the cold capping/ save your hair section helped me decide to try Latisse. I had some challenges before all of this and knew I needed to keep what I have. Eleven weeks later and my hair stylist gave me two thumbs up on the improvement...
Maggie
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What is LVI?
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I chose to only have the genetic testing for BRCA 1 & 2. Sloan offered additional testing panels for a few other gene mutations. However, since there does not appear to be a lot of empirical science behind treatment, monitoring and seemed to just bring on more stress, I forwent those panels. I have no real family history of cancer at all so I didn't rush to do testing before treatment.
Glad the Latisse worked for you. It's the little things that make us feel good that are so important sometimes, right?
Curious- on another note, I believe taxol weekly is what is offered to treat stage iv, also. Of course it's for longer than 12 weeks and/or a higher dose. With that said, it is by no means a weak chemo drug. You just suffer less side effects because you're only getting a small dose of one drug weekly as opposed to larger doses of 2-3 chemo drugs with different side effects attributed to each, given every 3 weeks. The cumulative dosage of chemo is equivalent, from what I understand. I'm not a trained medical professional but that is what I gathered from my research. I hope that is helpful.
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Good morning ladies,
Checking in. I celebrated 6 months past chemo on Feb 25th and I can say that my energy level is great. It does come back.
To all those who are behind me, some of the se's will go away right after you finish taxol - some will take a bit longer - like my neuropathy is still around. I still have a bit of numbness in the balls of my feet, around my face and slight numbness in the tips of my fingers. That, I was told, can take awhile longer. There is no pain, just a bit of numbness - an annoyance. It's my gift from taxol. Although I can say, it has let up from when it first started.
Ever since I had the lumpectomy, my boob hasn't looked the same. I had edema from the surgery with dimpling and pinkish coloring early on and areas of it feels leathery. I was wondering if any of you are experiencing a difference in the one that you had the surgery on. My MO, RO and BS don't seem to think this is a big deal. They say that it went through a lot between the chemo and radiation.
Interesting to hear that some of you on herceptin only are experiencing thin and soft nails. I am too and thought this had to be attibuted to the med. I've been putting Nailtiques on. You can even put it on under your regular nail polish. I opt not to go to the nail salon for permanent french like I used to. That stuff thins your nails even without meds.
Teary eyes! I thought it was just me.....especially if I put mascara on. I am wondering if it is the mascara or the herceptin - or both.
Boy, am I going to miss Florida! The snow up north just doesn't want to quit. They are getting more today!
Stay warm and se-free!
Hugs,
Marie
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Hi Everyone,
Had my medi-port installed in my chest today and I am so sore and in quite some pain.
Daniela - yes my doctor did say that Taxol and Herceptin may be less effective than F5( I think that's what she called the harsh stuff). So I brought up the Dana Farber study and the great results from that. She mentioned that that study mainly included older women. She wanted me on the harsh stuff because of my young age (42), and because I am hormone receptor negative. I was prepared for exactly this situation to fight for the Taxol/Herceptin. I told her that the average age of women in that study was 53, so there must have been women in their 40's in the study. I then told her that women in the study with tumors between 1cm and 1.9 cm were 98% disease free at almost 4 years and hormone receptor negative women were 99.5% disease free. I also threw in the fact that many stage 1 cancers are resolved when the tumours are removed. She was fine with me doing the Taxol/ Herceptin. I asked her about her other patients on taxol/herceptin and if they had recurrences. She said she has not had one. In fact she has not had one woman with HER2 relapse. Anyway, I'm going with the lighter regimen.
Special K - thanks for the LVI info. It is another avenue of escape and that most doctors don't give it much weight. I was just concerned about whether Taxol would be enough for my situation and that's why I wanted to know about women that were also LVI positive on this board taking Taxol.
MySunshine - looking it up, LVI is Lymphaetic Vascular Invasion. The cancer cells are invading the Lymphaetic cells of the breast around the tumor. As Special K mentioned, most doctors don't use it. They rely on the Sentinel Node Biopsy on whether the cancer has the ability to spread via the lymph system.0 -
mysunshine, LVI is lymphatic-vascular invasion, which means the cancer has spread to the lymph or vascular systems.
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Marie, my nails were so thin and sensitive that I eventually had to forego polish totally. It was just too painful to put anything on them.
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Marie, and anyone else that might give some advice. I've spent a miserable week with t/ h side effects. I've felt fury off and on, have a low grade fever 99.9. I called the mo several days ago telling them this but they didn't seem very concerned. I was afraid I was coming down with something but they really couldn't tell if I had anything or not,
Because of everything I'm reading here I figured these are just side effects. Also,this isn't turning into anything like a normal cold or flu it just seems to be the same. So I'm going into chemo tomorrow morning and I'm expecting to get chemo. The nurse navigator says they don't give chemo if you're sick but no one over there seems to be able to give me any answer.
I just have had a shitty week and feel like I've hit a wall. I just hate to drag my ass over there and get sent home but I guess that's what I'm going to have to do
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Suladog - Wondering if your pre-chemo blood tests today will show something a bit different. I had a few days feeling similar to your description. Haven't experienced again since then. Best wishes for an easy day today! Maggie
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Suladog. let us know how it goes today. I hope you are feeling better.
I'm just few weeks behind you, wondering what to expect down the road.
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thanks Maggie, about to go over there.
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FURY...definitely a SE from the start. My son wrote a letter to me yesterday "Mom, I know that you are stressed out, I will try to get out your way as possible...."
#3 infusion today, I have low WBC/RCT/HEMOGLOBIN/HEMATOCRIT, fatigue/running nose/watery eyes are main SE, it seems that I am carrying a baby named TH Chemo, it will takes me three months to deliver, looking forward to DUE DAY!
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Colleen.....You called it!!!!! I think I had that fury for a bit too! Maggie
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Maggie,
Well I got my chemo as we all seemed to think my symptoms were side effects. I had a low grade fever this morning and the minute the steroid premeds hit I felt A-mazing! Still do. I'd read somewhere on these boards that slowing herceptins roll helps ease up on the se. I asked my nurse if we could slow the herceptin to 90 minutes and she said she thought that was a great idea since I'm already hanging around wearing the hat anyway. So we tried it that way I'm really interested to see if that helps.
Other than that all my blood work looks great, I seem to be handling it really well blood wise. They remarked that I had a really great immune system and so I told them how that was due to my chemo 25 years ago. Before my first round of this I was a non smoking non drinking vegetarian with asthma and allergies to everything. A simple cold could get complicated and put me in bed fire eek so. I also got weekly allergy shots and had an inhaler. After chemo my allergies were gone and I was able to get my first dog. My allergist released me and said that I wasn't the first cancer patient he had that had this happen. He said that he and a group of allergists had been wondering about the use of fractionated chemo to build new immune systems for patients with severe allergies and asthma but the FDA wouldn't let them try it
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Suladog... Good to hear the blood work continues from strength to strength! 90 minutes, if the time in the chair/infusion center is available, seems to be the ticket with herceptin. Would love to go to 90 minutes, just nothing to base a request on! Have a relaxing weekend!!! Maggie
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Maggie I have a private room though my mo says no ones reported any problems w/ herceptin alone done in 30...so when I move to that phase I'll start that way and see if it's a problem if it is I know he'll change it for me. Normally he moves people to just. A measurement of 4 on the premed a but he's kept me at 10
At my request since it seems to work well for m
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I received Herceptin over 90 minutes during chemo and had the first H only infusion in 30 mins. I did not have bone/joint pain issues during chemo, but I sure did after that first 30 min H infusion - so much hip and leg pain that I couldn't sleep longer than 15 minute intervals due to having to shift position. It lasted for a number of days after that first 30 min infusion. I asked to slow it down to 90 again, and never had another problem. If you wish to have the infusion over 90 minutes due to any SE, and they have an available chair/bed, that should be enough to warrant it. There is also a school of thought that 30 minute Herceptin infusions contribute to LVEF problems, yet another reason to stretch it out if you can.
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I agree, Special.... 90 minutes for herceptin is much kinder to the body! Reading the comments from the Winter Chemo ladies receiving taxol/herceptin weekly and then switching to herceptin only every three weeks has been an eye opener. Thus my "comfort" in advocating for a 90 minute infusion....
Since I am in the clinical trial for T-DM1, a herceptin conjugate, I have stayed with the protocol, 30 minute infusion after the first (at 90 minutes), every three weeks. I've mentioned before, I request (during the post 30 minute observation period, which includes continued fluids) a higher flow rate for the fluids. I'm there, paying for the chair and the nurse. The bag of fluids is going to be thrown out... and the request has been honored without issue thus far....
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#3 infusion
I start to find blood from my urine, is it normal, I don't feel pain, no fever, but it scares me...
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Hi Colleen, I probably would let my oncologist know. I'm getting more and more convinced we should inform them about all unusual things that are happening.
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I am in the midst of this treatment now, with a similar diagnosis to yours, except I was grade I-II (only classified as Grade I because of low mitotic rate). My medical oncologist did not recommend Taxol/Herceptin but rather wanted to order only radiation and Tamoxifen (and I am triple positive - NOT!). So I went for 2nd opinions and wrassled him to the ground and he eventually agreed. The Dana Farber study results were officially published, I believe, at the end of Jan 2015 and show 98% success rate with few side effects. I am approaching week 5 of this therapy and so far few side effects. Am having some crummy diarrhea, which seems to be increasing (remember the dose is cumulative - the more you get into your system, the more pronounced your side effects are likely to become) and minimal peripheral neuropathy. I am using Penguin Cold Caps and so far have experienced no hair loss. My WBC's are dropping by about 8% per week and I anticipate I will have to get Neupogen at some point (Neupogen is used for weekly therapies as opposed to Neulasta which is only used for dose dense - they give you a whopping dose of it - which cannot be done if you are getting weekly treatments). I have read enough to know that I will be taking over the counter Claritin prior to getting Neupogen in an attempt to stave off bone pain. I now take it 2 days prior to bloodwork as I never know when the counts will drop low enough and I want to be ready. I had discussion with my oncologist about taking Claritin and what effect it might have since they routinely given Benadryl I.V. prior to Taxol/Herceptin infusion. He did not seem to think it would be a problem and so far it has not been.
A truncated review of the Dana Farber study can be found on Medscape - I don't have the exact title but you can find something similar under the ASCO website - "HER2 Positive Breast Cancer Patients with Small Tumors Benefit from Low Toxicity Regimen". This is a 2014 article and not the most recent. I don't think the whole article is available to the general public online. You have to have subscribed to the AMA Journal because that is where it is and even my radiation oncologist (who originally told me about it) doesn't subscribe to that journal.
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to anybody out there that might be able to answer some questions. I. Finished 6 taxol/h and am about to do #7 . I really feel like crap here. As it turns out my mo thought Imight have picked up a lite virus , but since my counts were great they did chemo anyway last week. Now I'm just very hoarse from all the coughing so my mo has prescribed a cough syrup to give things a rest. Meanwhile constipation is what I have the opposite of. I started taking Imodium which helps somewhat but not to get too too TMI , I've got some problems back there. I've told my mo but there's not much except get through this, any treatment for my " issue" would just be a complication with treatment. Soooooo, my butt feel is like a pony express rider , I'm tired and dragging yet my counts are fine. I'm taking all the L glutamine and other stuff I'm supposed to be taking., and soaking my as ever 5 minutes it seems. My MO says this is a "trough " period that 'l pull out of before I'm done. I know stuff is cumulative, as I did 8 mo of CMF 25 yrs ago in my 30's, but these are different ses, and I just generally feel crummy . I walked a mile this morning , normally do more than that and it felt good getting out, but I just generally feel all over bad. Any suggestions????i do talk to the dr so he knows. Everything that's going on, however as a man he's never had the actual experience
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Suladog - my chemo nurses were the go-to people for my side effects. My MO's nurse was also very helpful. I think there's something stronger than immodium - lomotil? I would ask the nurses. You might be getting dehydrated too. Also, when my bum felt really bad I bought the baby diaper rash stuff - can't think of the name of it - which worked great. I'm sorry you're feeling so low right now.
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thanks Pat, my mother has always said I gave her hemmeroids having me! ; ) revenge. I talked to my nurse navigator and they're prescribed a cough medicine for some cough relief, I'll ask about the lomotil though the Imodium seems to work. It's just the exhausted feeling, makes me cranky too. Boy did those steroids perk me up the other day. But I also know they're not great for you. Back in the day they used to really rev me up with prednisone both before and for days after chemo, I never had any weight gain. Etc from it but boy did I feel great! Of course that was in the days of ancient chem
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