ER-, PR-, Her2+ Roll call
Comments
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Pchyen- I had Taxol and Herceptin and had a few dizzy spells during treatment. I had to hold onto the handrail or sit down occasionally when I used the stairs. My only underlying condition is chronic neutropenia or low white blood cell count - even prior to chemo. But everyone is different on how they experience treatment. I hope you wife does well with her treatment. I also echo visiting the monthly chemo (Taxol) threads it was very helpful and supportive
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Pchyen, My cancer was caught early and my treatment regimen is milder than others on here, but I did want to chime in and say welcome, and yes, definitely read the archives, keyword search topics that concern you, etc. I went through hundreds of pages of archived posts in the weekly Taxol group prior to starting, and that helped me really get an understanding of what to expect and what steps to take to minimize side effects. I think one of the common themes regarding getting through chemo is to drink lots of water (I did 96 ounces a day and now I'm on 64 ounces during rads) and keep up whatever level of activity you can, as it will help fight fatigue and push the chemo through your body faster.
HR neg HER2+ doesn't mean anything specifically relating to stairs as far as I am concerned - that's going to be driven by surgery or chemo and those topics on here may provide more insight. If there is not a topic for Type 1 diabetics, something like that may provide more answers, so feel free to start that topic.
The diagnostic process and early stages of trying to come to terms with this label and all of the life-altering activities surrounding it were one of the biggest stressors ever on my decades-long marriage. If a patient navigator or social worker has not yet reached out to you, one should, and that person can help you learn the ropes and point to helpful resources, including mental health counseling for the patient and primary caregiver. If one does not reach out to you, ask for one. They are provided free of charge.
My coping mechanism for hair loss was to buy a rainbow of inexpensive cosplay and hilariously fake wigs from Etsy. This made it fun for me and the chemo/rads personnel all loved them as they are not commonly worn by patients. They are obviously wigs, so I'm not ever wearing one and afraid that someone will know it's a wig; I have an expensive wig that insurance paid for, and I rarely wear it but when I do I am always wondering who can tell. I'm much more at peace wearing pink or blue or ridiculous long auburn. Someone on here mentioned the pink wig project and I can confirm they are legit and I get so many compliments on my free pink wig. I'm anti-pink ribbons, and pink was the one color I refused to purchase, however I love this free pink wig and if it wears out before I am ready to go commando, I will buy another one.
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Thank you MinusTwo for the info. My wife does have a computer/phone but she is really overwhelmed with all this so I am trying to learn and gather as much information as I can to help her.
Thank you DogMomRunner for the insight. I will definitely keep an eye on my wife during her treatments and make sure she gets all the bell she needs. DogMomRunner, how did you make it work with having a dog while going through treatment? We have a 2 yrsold Chiahuaha that sleeps with us at night and I am sure that will need to stop when my wife is doing chemo to avoid infextion
MochiePie, thank you for the information. I was reading on cold cap but not sure if it really helps with hair loss during chemo? Worth a try i guess. Main thing I want to make sure is to minimize her neuropathy in her fingers/hands/toes/fee0 -
pchyen - I did not cold cap with Taxol chemotherapy because with taxanes many people ice their hands and feet during the chemo infusion to try to minimize neuropathy and nail damage. I had 12 1-hour infusions and the 12 hours of icing was painful. I would get IV Benadryl and sometimes take Ativan too, to try to doze off during the pain. There's not much you can do if you're icing, in terms of using your phone or reading a book when your hands are on ice. My hospital provided specimen bags with crushed ice in them, but not all do. Amazon sells cooling gloves and booties and the weekly Taxol thread has a lot of recommendations. For what it's worth, I'm 6 weeks PFC and had almost no neuropathy and definitely no nail damage, though I did have some nail bed discomfort.
Having said that, I looked into cold capping for a hot minute and decided against it. It is expensive, it's not guaranteed and in fact has mixed results, I had to go to chemo alone because of COVID, and you have to take the equipment with you. It's painful. It lengthens the treatment as you have to put it on before you begin and leave it on after you finish. I don't normally have a lush head of hair and knew that if I lost even 25% of it, it would look worse than if I just shaved it and wore hats or wigs. I have no regrets although regrowth is taking a while.
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Yees, Pchyen. Please encourage her to join with us.
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Pchyen - I iced fingers & toes with frozen peas in zip loc bags. I started 30 minutes before the Taxotere and continued for 30 minutes after. My infusions were an hour so two hours of icing.. The nurses let me keep an extra "set" of peas in the freezer and brought them to me half way through.
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will talk to my wife and encourage her to join the forum.
thsnks MinusTwo. I am keeping notes on what she needs to do and print a list for her so she doesn’t forget0 -
Pchyen- there really were no problems with the dog. She would sit next to me on the couch, she could tell when I was feeling bad. I did have to make sure that she didn't try to drink anything after me - before chemo I would put some of my water in her bowl and didn't do that while I was getting treatment. She was a big comfort to me so your wife might feel the same
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thanks! Our dog is a licker, she acts like a mommy dog. I will need to make sure she doesn’t lick my wife during her treatment as that will harm both of them
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question, had initial consult with surgeon today. It appears chemo first but 1/2 way through they add Herceptin? Is that normal or just an Ontario thing? I thought most people get Herceptin right off the bat along with chemo
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it depends on which chemo you are getting. They don’t give herceptin at the same time as AC chemo because they both have a risk of causing heart issues. If you get TC chemo, they usually give herceptin from the start. At least that’s how I understand it
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Thanks Melbo!
I’ll do a search on AC vs TC. Didn’t do research on that
Will find out and update or ask more questions.
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Hi pchyen, I am in Quebec, and I am following the same regiment. It have 4 cycles of AC every 3 weeks, and then I will have 16 weekly TH (+/-P based on my response to chemo) after. As Melbo mentioned Herceptin (or any other biosimilar, they use Kanjinti here) can't be used at the same time as Adriamycin as my nurse put it "it might be too much for the heart"
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thanks Aram! How is your AC treatmentgoing? I think I was in the March orApril chemo thread and saw you posted on the thread.
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AC has been really harsh on me specially mentally. For about a week after each treatment I am not able to do much. But then I come back to normal life...
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sorry to hear that. There is an end to it though! I just started doing research on AC, wife will be on it hopefully sooner than later. Will do my best to give her all the info and support her through all this
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Question (more for Canadians but everyone please chime in): Looks like Perjeta was recently approved in Canada for neoadjuvant treatment for HER2+ BC. Can we insist on getting Perjeta to go with Herceptin? Seems like H+P gives better chance of pCR than Herceptin alone. Might as well throw everything and the kitchen sink at it.
Aram, have you discussed Perjeta with your MO even if chemo is working well to shrink the tumour?
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I had TCHP right when Perjeta was first approved. The diarrhea was not pleasant. And I did not have pCR, so after surgery I had to have AC before rads. When it came time to start Herceptin again, I opted out of the Perjeta. Still NED 7 years down the road.
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thanks MinusTwo. You went with TC first, then AC. Here we are told AC first and from reading AC can be taken only once. Will ask MO the question
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My MO mentioned it is going to be +/- Prejeta based on my response to chemo. So I assumed after I am done with AC we will have the discussion.
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Your assumption is probably right; I think the discussion is mandatory. My onco initiated the discussion, even with my diagnosis. I told him that my only advantage would be that I would probably lose more weight.
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I have been in Perjeta since the start and have tolerated it okay. I do have frequent (almost daily) diarrhea, but it is controllable with Imodium and it’s usually just runny poo rather than urgent “gotta go now!” feelings or horribly uncomfortable cramps and discomfort.
Several of the women in my chemo group last summer started on Perjeta, but did not have good reactions and had to stop taking it.
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pchyen - some people who have AC (adriamycin & cytoxan) first, then have Taxol with Herceptin and not Taxotere. And they skip the Carboplatin. You may want to confirm the doc's plans.
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thanks MinusTwo
Just met the MO this morning and was presented 3 options:
TCH+P
dose dense ACTH
FECDH
Has anyone done FECDH treatment? I haven’t been able find any information on it
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pchyen, for what it's worth, MD Anderson's first choice for hormone negative, HER2+ cancers is TCHP. Not to oversimplify a very complicated issue, but it gets the Herceptin and Perjeta involved when the tumor hasn't been exposed to anything yet.
FEC is comprised of three chemo drugs:
- 5 fluorouracil (also known as 5FU)
- epirubicin
- cyclophosphamide
My mother was treated with Adriamycin and FEC twenty-five years ago (she was hormone negative but they weren't testing for HER2 positivity yet so we will never know that part of the equation). While she did have residual tumor and eight positive nodes (they removed all at the time), she never had a recurrence and is very much alive today.
Did your wife's MO express a preference? My MO never presented me with any option other than TCHP.
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My two cents: I was never presented with any other options than TCHP either -- my mom was an oncology nurse for years through so I asked her and she said TCHP is pretty standard. My MO said that since he added the P to the TCHP all but one of his HER2+ patients has had PCR to chemo.
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MO was leaning towards FECDH as my wife is type-1 diabetic and the concern with TCHP is that it may cause permanent neuropathy, as diabetics are more prone. My wife had been managing her sugar great and has not had any diabetic related neuropathy (almost 25 year diabetic).
we have 3 choices, UGH! Will talk to Nicole about it
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Ah, Type 1 Diabetes should be a huge factor in the consideration. As I have only tangential knowledge of that issue, I can't be of help there.
The neuropathy issue is real. I actually found this site because I was looking for ways to avoid neuropathy and learned about icing the hands and feet. I had a friend treated for Inflammatory Breast Cancer 25 years ago who was the first person I ever knew to take Taxol. She was in her early 30's and begged to stop the Taxol because she had such bad neuropathy. Dr. Frankie Holmes, who was her second opinion MO and who also performed the first clinical trial of Taxol resulting in approval for use its use in breast cancer--would not allow it. Like my mother, my friend is alive today even though IBC was not nearly as successfully treated back then, with no permanent neuropathy. While icing hands and feet has helped some and not others, I did it and have no neuropathy. It was worth short term discomfort for me to say I at least tried something.
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pchyen, unfortunately I don't know enough about diabetes and its effects. I wasn't given a choice either, and I personally would have preferred to have TCHP at the beginning. I brought up this question to my MO, and his answer was this: 'ACTH VS TCH has been compared in large studies and appear to be equivalent although ACTH has more data supporting it and is the gold standard. TCH is given often but a harder chemo on the body and usually is given to patients whom have heart issues.' I have gone with his recommendation as he has rave reviews, and I decided to leave it in his hands. If I were you, I would have tried to get a second opinion if possible. For me, as it happened, my surgeon oncologist kind of mentioned he would have recommeneded the ACTH same regiment. My MO and SO are both from the same center, Mcgill, and they both have had the same recomendation, so maybe different centers have different protocols. From what minustwo has said, it seems MD Anderson's recommendation is TCHP.
I personally find it very surprising that the MO has given the choice without explanation of why. how are you supposed to choose?
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I just wanted to take a minute and thank each and everyone of you providing such valuable information. I think I have finally convinced Nicole to join, will remind her, LOL!
Melbo, that is very encouraging that adding P to TCH gives people a better chance of pCR! I know Perjeta will be out of pocket expense but we will manage and pay for it, throwing inthe kitchen sink as well.0
