HERCEPTIN and/or PERJETA Threads
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Macy, losing the hair is the hardest on me. It makes me the most depressed besides the weight gain from steroids.
This is my fourth time for hair loss. I had hair for the last 3 1/2 years and just this past year, it wasn't the grown out chemo hair but real hair (thin) but I could style it and look normal!!! I bought 3 wigs, still not crazy about a damn one...I don't know if my head grew but I had to fix them, all too small. I don't have an average head I guess.
I really don't mind the hat wearing thing unless I want to Blend in...like out in public. It is so cold here I wear winter hats and no one is the wiser. I just don't like the stares or sympathetic smiles.
My weirdest thing/anxiety has been my sons Hockey events, I wear wigs or hats there. I didn't want people to know.
I hate hate hate it, I hate it when people say it is just hair or I look good in hats, what ever...I just want my hair. I am obsessed. I look at everyones hair on tv and around me. I can tell extensions, and bad wigs. Seriously, most people have crappy hair!! thin or bad cuts..
LOL.
I didn't shave and let it fall out, i have scragglers, like an cancer 80 old man. great look...
Janis
bald, over 50 and not happy about it!!
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Michele - thank for explaining this to me. I have an appt. with my onc. next week. I am gping to ask for a referral. Thanks so much.
Renee
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Janis, thanks for understanding about the hair loss issue and for sharing your experience. I was very lucky to have escaped losing my hair during my Stage III treatment. I'm glad for that.
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Bump! How are we doin' folks - everybody good? SUE
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Hello Sue. Doing ok. Have an oncologist appointment tomorrow. At my last appointment my tumour markers were up 5 points so I am hoping for better news tomorrow. However, we had a wonderful week and a half in Hawaii. Even managed to not think about cancer every once in a while. A much needed break for the mind and body. Thinking of you all. ~ Karen
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TEAKIE88,
I am currently on Perjeta and Herceptin, along with taxol. The treatment has been working well for me. I'll be having my 5th chemo on 18 March, but so far so good. I haven't noticed any negative side effects, other than hair and nail loss. I seem to be able to move around better after each treatment, so it does seem to be doing good for me. Hope this helps!
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Fitztwins,
Thanks for your post! I thought I was the only one taking my hair loss so hard. I cry about it often, and even though my husband tells me I'm beautiful, it's just hard for me to believe. I feel exactly the way you do. I would feel so much better about myself if I could at least have my hair back! Thanks for understanding!
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Hello Sue! Doing well since dropping the Taxotere at the end of December. Starting to go out in public without a wig or hat (although not to work yet). The other day I noticed I have stubbly eyelashes! Of course, I also had to buy new razors for my legs. I forgot how expensive they are.
Now that the weather is nice I've been trying to get out and move. I was in too much pain to do much in the fall, and sat on my rear all winter. Last weekend I did too much (which really wasn't a lot) and aggravated my back, which of course made me think the cancer was progressing....but it has calmed down now and I know I have to take it slow.
Hugs to you Allyme. Just remember...it will come back!
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Hi Sue, doing ok. Tumor markers went down 13 points last week. I meet with oncologist today to discuss what we will do if my next mugga is bad again. Hope I can stay on herceptin and perjeta. Appreciate all of you.
Renee
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Still waiting to start treatment. It's only been two weeks since my biopsy so I'm still healing. I think my medical team and I have a plan (mostly). Has anyone here know anything about or done anything with immunotherapy with regards to MBC? I'm trying to find out more about this avenue of treatment and so far, my internet searching has not turned up much.
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Hi Sue and everyone, I'm just playing the waiting game. My onc ordered a PET last Friday and no word from radiology yet, so I'm guessing the hold up is my new insurance. Fun fun fun! It would be nice to get it done before my next infusion on the 26th, so we know whether to stay on H&P (yay) or switch to something new (boo). I know you've all been there
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I am doing well. I have appt tomorrow morning with psychiatrist. Hoping to go over all my meds and tweak if necessary. Also going to ask about Ritalin. Between my depression and the cumulative fatigue from treatments...I'm really struggling! How are you sue?
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I was sent to er today w a mask because my platelets were very low . Fingers are cold, blue, and painful. Rash. NOT. They redid my bloodwork and it is great. The rash and finger trouble is from gemzarr and will be going away now that I am off. Oh, happy day!
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Oh Barb! Wishing you well - glad that the wretched gemzar is a thing of the past.
Glad to hear that folks are truck'n along. I am doing well, thanks. On chemo break until at least June when I will need to be scanned and then we will see. Meanwhile ongoing H&P are not too awful. Just returned from a therapeutic quick trip to New Orleans for a shot of warmth-worked beautifully, and managed to miss a major snow storm here in Baltimore. However returned to a backlog of stuff to take care of, and some major family stuff. Sigh: I guess life goes on, even when you have BC.
Wishing the very best to everyone who is waiting and who has apptscoming up. Hang on, folks, spring is right around the corner. Love to all SUE
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Same here...hangin on to hope that h/p/f are doing the job! Thinking I'll have scans in April/May...when my onc talks about dropping perjeta!!!! Anyone else heard of that possibility? I know the ses I have are that...since I did a year of h in 2010...but they're do not a problem. I'm curious about no p!
Had my echo yesterday...tech pronounced my heart as strong, w/beautiful rhythm, rate of 65. I ask for him because he's adorable, kind & admitted he's scared of cancer, especially when he sees so many people who lived healthy lives & still ended up w/C. I found that refreshing (am I weird?). My TMs are doing well & I've been wearing mascara on these flimsy lashes and not having reactions...woohoo!
With my pathetically white hair, I need something to brighten my face :-). Macy & Fitz...I've always been obsessed with my hair (kids call me a hair whore) so I'm at my wits end trying to figure out white, coarse, somewhat curly, stringy hair. I went to my haircut appt at 12:15 today...it's NEXT Friday. I felt stupid and angry...so she's working me in at 6! I wish I didn't care...at least I have hair...I'm hoping for more good hair days (and more days, weeks, years in general!) for all of us!
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RonnieKay-definitely question your onc about dropping the Perjeta. In the Cleopatra trial everybody dropped the taxotere after 6-8 rounds but the control group continued on with just H and the experimental group with H&P. There is something synergistic about the 2 together that led to a 15 month increase in overall survival for H&P compared to just H. I did a stretch of Herceptin alone but when that data came out, my onc agreed that we should add Perjeta back and it pushed my markers back down when they were starting to creep up. If your scans are good why mess with success?
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if it ain't broke, don't fix it!
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Thanks for perjeta input...appreciated
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Hello all -
I was just recently diagnosed Stage IV after a PET scan and biopsy that showed a single liver met (no lymph node involvement so it must have spread through the bloodstream). When my onc called he told me the median overall survival was 14-16 months. I am 35 and have very young children. The diagnosis was crushing at first but all of you are showing that there is certainly life much longer than 14-16 months after a diagnosis like this. I asked him about the Cleopatra trial and he agreed that my OS was probably longer. I was extremely upset that he gave me those stats when they don't really apply to my specific situation.
I was wondering if anyone had a similar diagnosis (stage IV/Her2+ from the beginning and not recurrent with a single met) and if your onc suggested anything other than just the THP? Like radiation or surgery for the met spot or anything else? My onc is saying that he doesn't recommend it because it doesn't do anything to lengthen my life.
I just started THP on March 12 and can no longer feel the lump that was distinguishable just a week ago. Have any of you had this first line treatment and how well did it work for you? So far, the side effects have not been bad at all. I'm just at a point where I want to make sure I'm doing everything I can from the beginning to fight this cancer. I have tried calling for second opinion Dr. appointments this week but nobody will see me since I've already started treatment with another doctor. They said they would be able to talk to me after I finish the chemotherapy.
I really appreciate everyone's contributions to this thread. It has helped me tremendously. Best wishes for you all.
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josalive, the stats he quoted you were extremely old and maybe based on NO treatment??
Cleopatra has been show to have over a 5 year survival rate...this study came out 7 years ago, I was ineligible, but am doing it now!
I have been living with METS for over 7+ years.
Good luck, sounds like you are on the right path. If you can maybe attend one of the MBCN conference this fall.
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Hi josalive, glad that you signed on. You sound like you have a good head on your shoulders and are asking the right questions. I am distressed that your oncologist was so discouraging and gave you old and misleading information - boo on him! I have lung mets (lots of them), am HER2+ and have been doing really well for 4.5 years, and plan on doing well for many more. There is tons of good news for us out there - hope your doc gets with the program. Best of luck, SUE
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josalive - I was diagnosed 7 years ago come June. My liver was pretty much covered when diagnosed. I now have one spot on liver, after a couple of years of being NED. I was told I had 2 years at the beginning. I was stage IV and Her2 positive from the start. No one can predict how long we have, but treatment can work for a very long time. I wish you the very best.
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Josalive, I was diagnosed Stage 4 from the beginning with 2 little surprise mets in my left lung found on PET. My docs felt that we should be really aggressive because there is a subset of people who are "oligometastatic" and can have much longer OS. So I had THP, mastectomy and radiation, the whole shebang. I've been stable with just the Herceptin and Perjeta for 18 months. It is controversial whether this makes a difference vs a more gentle approach with just a systemic treatment like THP. At one point there was even some talk about taking out the lung nodules, but I was doing so well that we decided against it. At any rate it's been 2 years and nobody would know I have Stage 4 cancer to look at me (hair grows back after you drop the taxotere). I saw some scary stats too but my Onc told me "I'm sure we can get you 5 years, 10 might be stretching it but you never know" So hold onto hope, you're on some great meds and some people have really dramatic responses and do very well for a long time.
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Has anyone lost there hair with herpitan prerjeta
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I have not lost my hair, but it has thinned.
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Josalive – I am so angry at your oncologist for giving you those kinds of numbers.Everyone is different, but as you have already noticed, there are many women here who are 4+ years out from Stage IV diagnosis, and I think the fact that you have only one met makes it very likely that you will do well. I think you should persist in looking for a second opinion. I don't know why they wouldn't at least consult with you even if you are on chemo.
I was dx HER2+ stage IV from the gate back in August at the age of 41 with mets to the bones. Had radiation to take care of several spinal mets and six rounds of THP. It wasn't easy, but it was nowhere near as difficult as I expected it to be. The first round was the worst in terms of side effects (mainly because it was overlapping with lingering side effects from the radiation). My breast lump did not completely go away, but scans showed "stability", and the dr. said the tumor would probably continue to shrink under the H&P, so I dropped the Taxotere at the end of December. So far so good!
Patti - My hair came back once I was on Herceptin and Perjeta alone and yesterday was the first day I didn't wear a wig to work!
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I lost my hair when I did the Taxotere, but then when I just went to Herceptin and Perjeta, my hair has started growing back. The only problem is that it is growing back very, very slowly, so it's going to be awhile before I have a full head of hair again. Ann
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I think in this day and age if any oncologist gave that stat of less than 18 months, I would get a new oncologist!
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Re: the hair question, my hair has actually grown on H&P alone, enough to get a decent haircut! HOTCHA! It got pretty thin when navelbine was part of my cocktail and it seems thin to me still, but my hair lady needed to remind me that I am over 60 now (lots older). I am super grateful for the hair I've got - don't worry hon, you will have some. SUE
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patti451 - My hair grew back when Taxotere was stopped in June. Now it's only Herceptin and Perjeta every three weeks. My hair grows very slowly but is very thick and curly, The complete opposite of my original hair.
josalive - I am very disappointed that your onc would make that comment about median survival. He/she is obviously misinformed. And also a terrible bed side manner telling you that over the phone. I've stopped listening to or reading about statistics. Each one of us is unique and the "median" is merely a number.
Have a wonderful evening everyone ~ Karen
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