HERCEPTIN and/or PERJETA Threads
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My experience with the rash is similar to that of Shutterbug's.
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Hello Everyone! Haven't been on for a while. It's rained inches today and I'm enjoying being dry and warm inside!
Chemobrain or now I suppose H&P brain--I can't remember who asked about what or said what about what but here's my reaction to the drugs:
First though: Great article about NED. Always encouraging to see hopeful results from data analysis. I just learned that thanks to HIPA our results can't go into a big database that shows, anonymously, type of cancer, drugs administered, results. Huh?
Appetite: Someone asked about SEs related to eating. I have lost about 20lbs since going on H&P a little over a year ago. I kept my weight up during chemo and afterwards got my taste buds back...mostly. I guess food just doesn't have the appeal it used to and I don't have the robust appetite I had PreC so I don't eat as much. I eat a lot but move a lot too.
Cyclical Effects: I have ups and downs surrounding H&P infusions. I don't keep a cancer journal so I don't know for sure but the week after infusions I don't feel so great (not bad just not my best and increased joint aches, muscle pain, appetite loss) then I climb out and feel better (and eat better) then I'm back in the chair again. At some point I have molasses muscles--like extending my leg feels like I'm pulling taffy.
Muscle cramps/aches and Sleep: Gabepentin at night seems to help with muscle cramps and aches and pains that cause troubles sleeping. I know-- it doesn't put everyone to sleep but it does me so I take 300 mg? (a low dose) and go to bed and I sleep through the night (don't even hear DHs snoring---yipee!!!!). I tried taking it every 8 hours but that just made me drowsy all day.
Administering H&P: My infusion center takes 1.5 hours to administer P&H--once they get it from the very slow pharmacy. 30 minutes for P, half hour wait, then 30 minutes for H. Or it they do H first it's 30 minutes H, 30 minutes P then I have to sit and wait for 30 minutes before they'll unhook me. Urggg--that wait time just kills me!
Eye Sight: I waited until after Taxotere was over to get new glasses and sure enough my eyes stabilized so I then got a new prescription.
Fatigue: Iron. Does anyone else get iron shots? My family doctor wanted it tested and it was low so I just got iron on my last 2 infusions. It's boosted my energy and hematocrit. I think my Onc just thought low blood counts was normal SEs. Though I have low white blood count--why?Now I'm going to ask to have my B-12 checked. What do you vegetarians and vegans do about B-12? And do you have it checked regularly. It can cause neuropathy and cause fatigue. I don't eat a lot of meat or shellfish or take multi-vitamin.
Here's to all of you fabulous fellow travelers! Love you all!
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they dont make me wait between the H & P. should they?
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I also do not wait but have both infusions given over an hour and fifteen minutes each. For me, this helps with the severity of the side effects.
Wishing everyone a good day.
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When I go in for infusions, they start me out with saline infusion for about 10 minutes, then Herceptin, then 10 minutes saline infusion, then Perjeta, then another 10 minutes saline solution. Ann
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I think there is supposed to be a 15 minute waiting period between H & P. It's not consistent, though, but then until the most recent one, I was getting Taxol with the H&P.
I also had the rash the first couple of H&P cycles. Then it disappeared, then it came back a couple of months later.
P: Diarrhea comes and goes. I manage it by avoiding rich foods just after the infusion.
Miche: My hemoglobin went way down when I first started, and they gave me a few iron infusions. They were great; I could feel the energy coming back as I sat in the chemo chair. Told the MO I'd come by every morning for one!
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OK ladies - CAN I STILL HAVE MY GLASS OF RED WINE AFTER H&P INFUSIONS?? If I wait a few days?? What do you think???
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Sscrunchthecat: I say yes. During our summer long heat wave, I had the occasional gin & tonic, just not when my stomach was feeling it after the Taxol.
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Have the wine! I do.
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lol - awesome! I have had a glass of red wine or two from time to time on THP - several days after infusion. My onc says it's OK, but I always worry.
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When the surgical oncologist who did my liver biopsy called me with the bad news she said--I'm sorry, your liver tissue is riddled with small tumors and there are several inch diameter ones too but I've gotta say, otherwise you liver looks really healthy. I was on skis half way to a mountain chalet that serves meals and wine. So I said, can I have wine? I'm on a little ski vacation. She said, drink as much as you'd like and party now because you're going to be in chemo (I'd had no reason to believe I had MBC except a small change in one lymph node--I felt great).
I didn't drink during Taxoterrible but now I do. Everything in Moderation and Life is Short I guess. We have wine nearly every dinner, I just don't always share the whole bottle. And I love G&Ts on a hot summer days. Guess I'm going with your liver tissue looks very healthy and the tumors were obliterated during chemo. No one seems to know just where these drugs are metabolized. As grandpa used to say, Here's mud in your eye!
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Haha! I love it! I'm a craft beer gal myself, although I did stay away from alcohol while on chemo even though the doc said it was ok. I agree...life is short...enjoy what you like
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I have lost weight/appetite on P & H, also take afinititor and femrara. Am NED over yr now. Went to local fair friday and got wore out. my feet hurt so bad!! Getting anxious/nervous about our anniversary trip. Ackkk its in less than 2 weeks!! My husband lives back home in Va while I relocated with the kids 2 yrs ago to Tx. So am excited to see hubby. Saw him in august. He can't retire until jan 2017. countdown starts in jan. I relocated here for my MO.
I started painting class and I love it. Its been on my bucket list forever. I signed up and went to class. I am not a nurse anymore I am going to be the artist I wanted to be. took me lots of soul searching to get to this point. If I could figure out how to post pic I would.
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Happy early anniversary to you and your hubby Fredntan! Enjoy your trip and try not to think too much about the big C. It is wonderful that the two of you will be able to spend some time together. It must be very difficult to be apart for so long. I hope you have a wonderful time!
Would love to see some of your paintings some time!
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Fredntan - Would love to see some of your paintings. I admire that you are doing something that you love. Enjoy your anniversary trip! ~Karen
PS - I have gained weight on H&P and I don't have an appetite. So frustrating.
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Hello to you all...just found out today onc is adding Perjeta to my Herceptin. Hair loss??
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No hair loss for me!
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omg I did it. here is still life of apples. I changed the dark grey up top to yellow. makes it pop more
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Fantastic Fredntan! The colors are vivid and rich. You are very talented.
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Very nice Fredntan! It is so wonderful that you have discovered your talent for painting!
Babyduck- my hair came in thick and wavy after dropping the Taxotere and staying on Hercpetin and Perjeta.
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awww thanks
and my computer skills have improved. In your face chemo brain.
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Wow, fredntan, so wonderful. Keep 'em coming. SUE
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Treatment number 5 has wiped me out. I am trying so hard to keep going. Just hoping that when I can drop the taxotere it will get much easier Did you all find that your digestive issues got better when you were only on the herceptin and perjeta?
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yes!!!! It takes a little while to adjust but you won't be living in the bathroom anymore!
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Not everyone is so lucky.....I'm on month 14, still suffer with the Big D despite loads of lomitil and probiotics. Most days are manageable
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Beatmom-you said you have been on it 14 months. Have you been able to stay stable so far? Any shrinkage in the tumors? So far my tumors have not decreased at all while on this but I have not had any progression of new ones. Just wondered how you were responding.
Kjones13-Are you still on Herceptin, and perjeta? What has your overall response been?
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BabyRuth - I had 3 tumours in my spine after I completed Taxotere. I have since been on H&P only for 16 months and now have only one very tiny spot in my spine that the oncologist said may or may not be cancer. I was stable with the 3 tumours for 13 months before there was further response while on H&P only.
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Mikarae-that is wonderful news to hear. That is the ultimate goal for us to remain stable. I just find it so hard to think about being on this H and P regimen for so long. I love to hear all the good news stories. You all are such an inspiration for me.
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Just wanted to pop in for a minute to share information on my experience with H & P. Started it in June of 2014 when my cancer came back as Stage IV along with Taxotere and Zometa. Finished my doses of Taxotere around October I think and then just continued on with HPZ. There were so many liver tumors and bone metastases that there was no use trying to count them. By the time March of 2015 rolled around my PET scan showed NED, and my last PET scan a week ago has also shown NED. I have found that at first once I was finished with Taxotere that it was probably the Perjeta which caused me to have a couple of rashes develop, and then they went away. I had some actual scabbing inside my nose, runny nose, vision changes, and some fatigue periodically. I find now that I am almost a year and a half out from start of treatment that these symptoms have lessened down to almost nothing, other than some fatigue just at times, which may be treatments, age-related, or because I like all of you, am extremely busy everyday.
For me personally, I am doing everything within my power to maintain my health and well being. I try to eat much, much better than I ever did before, I walk 6 miles a day, use visualization skills, spirituality, and most importantly, maintain a will to live, as well as "hope" that new drugs coming down the road will help all of us at least manage the 'beast" for the rest of our lifetimes.
I have so far been extremely blessed and humbled by this cancer journey, and i enjoy each day as it comes with hope that we all can maintain as well as possible under less than ideal conditions. The farther down the road i go, happily the less I dwell on my cancer, and I think that has helped me considerably.
Ann
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