TRIPLE POSITIVE GROUP
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Thanks rljes!
I’ve also found the drippy nose, raw & irritated nose absolutely maddening. I keep tissues in my pockets at work because it’s truly non-stop. I tried the Ayr saline gel but found it burns when applied to raw mucous membranes in the nose, so I’ve opted for a thin coat of Vaseline a couple of times a day. I’ve even considered trying a water-based lubricant like KY because that should absorb well. Sounds kinda strange but I’m thinking it should help. I’ll share my results once I try it.
I just had round 3 of 6 (T/C) yesterday so I’m halfway there, but Herceptin & Perjeta continue for a full year. Then an AI gets added in somewhere in there.
This whole process leaves you feeling so out of control. I’m a healthcare professional but know NOTHING about chemo treatments. This is all new to me, but I’m hanging in there.
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Waving at you from east on 64, Adhoney! Congrats on reaching the half-way mark. I have my penultimate Herceptin tomorrow and I must say it's been quite a haul. A year ago I was getting ready for my youngest's college graduation--started chemo three days after I got home. Now that I think about it, I'm curious where I'll be a year from now. My hair came back (kind of gangbusters!), and it's even started to straighten out--earlier than I thought it would, but I'm excited to grow it out. My nails are almost back to normal. I started the AI several weeks after rads and that's going okay. Maybe next spring I won't be thinking about BC every day!!
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Adhoney - have you tried Aquaphor for your nose? I use it at night to prevent drying. I only started using it, in desperation, a week or so ago, and it has made a huge difference. No bleeding this week!!
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I second vaseline/Aquaphor for the dripping nose. Will prevent irritation and bleeding.
It is maddening. When I am carrying a biggish handbag, I put a box of tissues inside; not a little bag, but the cardboard box. A bag of tissues is too stressful, bc by the time I open the bag and get the tissue I am already dripping on the floor. That's how bad it is. At work, I have a box of tissues at my desk, and all my coats/jackets have tissues in the pockets. I cannot get up to get a glass of water, or go anywhere without tissues. At home there are box of tissue everywhere. This has been going on for a year and a half now. It is second nature now.
Adhoney, chemo is just a few months. It will soon be a thing of the past. Think about a pregnancy.
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Hi lngerp! I’m hoping that your last day of Herceptin goes well. I actually work at Sentara Martha Jefferson Hospital in Cville and there’s where I’m doing my treatment. It’s a beautiful hospital and I just love my medical onc there.
Annie60 and LaughingGull, I started the Aquaphor in my nose last and again this morning, so far so good. Thank you both for sharing that idea. I’m gonna use it religiously! I like the idea of comparing this to a pregnancy, that’s about the time frame. I’m counting down the chemo treatments!
Praying that everyone has a restful weekend with few side effects. I’m ready for a nap....
Angie
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Hi everyone - I have my first treatment this coming Tuesday 4/30. TCH+P - trying to prepare myself mentally as best I can. Obviously learning way more about BC & chemo than I ever thought I would!
Has anyone asked MO about the new Herceptin Hylecta (injection instead of IV). Just curious.
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Adhoney I just got back from MJH!! Had my penultimate Herceptin. And yes I’ve been very happy with my care there.
Alicesneed—I got home from H one day in March and read that the FDA had just approved the subcutaneous version (which has been used in Europe for quite a while). I called them back and asked what the timing would be. The nurse says it takes a while following FDA approval for it to become the standard of care. They have to manufacture the drug, train the nurses, . . . She didn’t know the time frame but said definitely not within the nine weeks I had left til my last one. I meant to ask my MO today but forgot, and it won’t affect me anyway.
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Ingerp: congrats for finishing the last H, it must be a good feeling.
Just out of curiosity, how many Hs (including the ones during chemo) did you have together? 17 or 18? I thought my wife would finish her last HP in June as that would be the 17th, but two weeks ago when we saw the MO, she said July would be the last one and that will be 18 in total. Didn't most of you have 17 only?
Have a wonderful weekend
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Congrats Ingerp!!
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Whoops—penultimate one was today, not ultimate. Last one May 17th.
Lily the Herceptin goes for a year. I had 12 weekly with Taxol + 14 H only, although your wife was on a different schedule so will have a different total number.They adjust dosage according to timing (I’m getting three times as much now, every three weeks, as I was getting weekly last summer). Her end date should be about exactly a year after her first chemo.
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Alicesneed, I am getting Herceptin in a subcutaneous injection. Idk if this is of any help to you, since I am in Europe. It's very convenient, no i. v. needed. I got the injection yesterday and it took about 5 minutes.
What I find interesting is the dosage. I have zero medical training, so I don't understand this very well. The subcutaneous injection apparently has the same dosage of trastuzumab for everyone. I had some flu-like symptoms, that's when I found out. The dosage for a woman twice my weight is the same as for me, so I think that is where my aching body is coming from. I wonder if I get the "flu" again this cycle
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LilyCh, I will have a total of 17 HP infusions when I’m done but I do know some others have 18. My doc just said 52 weeks divided by 3 is 17.3333 so he rounded down
Being in finance my whole life this made sense to me....and I get done in the same month as I started in 2018. Take care
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Hi Lily, I had the 16th this week and have 2 more to go so that's 18 in total while perjeta is 10 in total
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Lily, I have 6 TCHP before surgery , one extra HP before surgery because my surgery was delayed, today I am having my 5th after surgery, I still have 7 left. So I am having 19 tota
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I used to have dripping nose for couple of days during chemo, but not now when I am having HP only. I have that D occasionally but only starts the 3rd week after HP. Having minor side effect also makes meworried sometimes, is HP working for me 😓
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Ingerp, MACTAZ, Princess_Meg and Hongh,
Thank you all for the input.
My wife started HP (along with chemo) in the middle of last July and will finish early July for a total of 18. Per your experiences, it makes sense.
Thank you again.
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Hi Hongh, I can understand why you are worried if HP is working for you because you have minor SE.
Everybody is different and we all react to medication differently. The side effects most people report here e.g dripping nose, diarrhea etc are alien to me as the only SE I had after 5 infusions was low ejection fraction which is dangerous but has long returned to normal. So you see, we react differently.
I don't think there's a clear cut way to know if it's working especially when given after surgery. You just have to do what you have to do and make peace with your decisions. That's how this journey goes.
P.S; You didn't state the BCstage or nodal involvement on your profile
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I never counted herceptin infusions. I was finished in 11 months however. Taxol for only 8 weeks because of painful neuropathy. Coming up on 2 years on AI's. Most days it's OK.
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Hi Hongh I didn't have a lot of SEs on Herceptin only. The worst I had was the D and a slightly runny nose. Other than that H was a breeze after 12 weeks of Taxol and H. I had 3 solo H's after chemo before my surgery.
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Hi Princess and Nanette, thank you for your reply.
My Dr didn’t give me anexact stage before surgery they say might be 2B, but I had a 100% pCR so now everything is 0, no node involved.
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Hi Hongh, you are extremely lucky to have achieved 100% PCR. You should be thankful for that.
A quick question though, why did you have a mastectomy when you had a 100%PCR with neoadjuvant treatment? Why not a lumpectomy which is less invasive and easier to deal with? I’m just curious..
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hope everyone is having a lovely weekend. I am busy recovering from my daughters first dance competition. She is on the left.
I made the decision to wait six months and not do a biopsy now. I'm tired of being poked.
Love to all
-Tres
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Tresjoli - beautiful picture of your daughter!
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Tres—lovely picture. Good for you.
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Hi Princess, yes I am very happy about the 100% result. My original tumor was 4.7 cm grade 3, and MRI shows 2 more areas in the same breast(no biopsy on those two). After 6 chemos the original one didn’t light up in MRI but the other 2 still does. So mastectomy on the left is for sure . My genetic test shows I have PALB2 unknown variation, although it’s not mutation, I still don’t want to give it any chance. I just don’t want to worry about the other side later, even people say it will not 100% reduce the chance. My oncologist agreed with me when I decided to do double , since he also thought mine is aggressive.
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Hi Princess, my situation was similar to Hongh. I also achieved 100% PCR and had a single Mx. I had 2 tumors along with DCIS. My BS was not comfortable with doing a lumpectomy because of all the cancer found in the single breast, was multifocal. I got a second opinion and they also agreed the risk was much higher that there could be cells that are not identified. I opted not to take the risk.
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Hongh and MACTAZ, your situations clearly warranted a mastectomy. I wish my hospital allowed mastectomy on my other breast. They said no because one it doesn't reduce the chances by 100% and secondly, I tested negative to genetic testing even though as at the time of my dx, my mum was being managed for stage 4 BC, she passed on June last year.
I did lift on the other breast and asked my PS to take out as much breast tissue as he can. Anything to get rid of the good breast...lol
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Hi Princess. I am just astounded that your hospital didn't "allow" you to have both breast removed. My tumor was in my left breast and I insisted from the beginning I wanted BOTH breast gone - since I was not going to have reconstruction. No way was I going to have just one sagging breast looking at me everyday in the mirror. My BS didn't want to 'take a perfectly good breast" but I was insistent. Both breast are gone, insurance paid, and I have no regrets.
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Princess - also astounded here. It's your body, it should be your decision.
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rljes and hapa, yea those were the reasons they gave me. I had reconstruction done and they look identical in shape and size. I will be having nipple reconstruction done in June. They are still monitoring the good breast with ultrasound and mammogram. I just want the peace of mind whichever way.
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