HERCEPTIN and/or PERJETA Threads
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Illimae I wish I could blame it on cocktails haha! I've had exactly one glass of wine since my DX because I was on morphine and fentanyl until recently. Just had my first glass of wine while on vacation and it went right to my head hahahaha!! Now I'm a cheap date!
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I found that I would get cramps in my muscles after the odd infusions myself. Adding epsom salts to my bath helped. I also started adding extra salt to my food and was told by MO to eat more salty foods as my sodium is a bit low and that is known to cause cramps. I was also drinking a lot of water which depleted my salt. I sometimes mix half sport drink and half water to keep up the electrolytes. Cramping is gone for me now.
I do get tired BUT if I exercise starting soon after I get up, the fatigue is less intense. If I cant handle a walk due to hot weather, I do chair workouts and walk in my house. If I sit too long, I only get more exhausted.
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Thanks mara, that might be it. I've been drinking about a gallon of water every day and haven't been drinking sports beverages/electrolyte fluids like I did when I was doing chemo, so it makes sense. I'll try soaking my feet in epsom salts (I'm not a bath person) and eating more salty foods.
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I don’t get cramps but do have intermittent neuropathy in my fingers and mainly feet.
The crushing fatigue kicks in as soon as I’ve had treatment and testing doesn’t ease it. I find that in general I am much better physically and emotionally if I keep moving.
I hope the suggestions on here help.
I hope to get a long run out of HP.
L x
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Had anyone had a surgery while on Herceptin? Had brain surgery and 10 days after I received my 3-weekly Herceptin and perjeta infusion. Afterwards I felt as if hit by a bus although I felt exhausted already after the surgery.
My experiences after HP were: increased neuropathy, tummy issues, liver and joint pain, dry nose, even drier lung, vocal cords and throat causing symptoms of a pneumonia. A nebulizer with Dead Sea salt-Walter Solution helped a lot.
As I had my 2nd HP after surgery I had a bloodwork showing all values within the normal range and side effects decreased and are still decreasing except a light pain in liver and joints which keep coming and going. Did anyone make a same experience? Does HP double issues when the body is weak
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Hello, everyone, and thank you for all the information. I am trying to get caught up after a few months of being away and quiet. It is SO nice to be able to communicate with people who know exactly what you are going through.
I am especially grateful for all of you who have shared your SEs on H&P, especially since doctors and nurses keep telling me that these aren't SEs of HP. My skin is so easily irritated that I can't wear a bra at all ever. In the summer, I have gone on beach vacations, and I find that the seawater helps tremendously. However, baths with seasalt have not helped a lot.
Lately the thing that is really bothering me is the neuropathy. I have sensation in my feet, but also tinging, and it hurts to walk. Sometimes it burns. This morning I had burning in my fingertips, and that really freaked me out. Should I suggest reducing my next dose, which is scheduled for the last week of this month?
I used to be a runner, and now I can't run at all. And walking hurts, even if it is just walking across the room to get something. Stairs are also quite painful in my knees, and I tend to take them one at a time. I really miss walking.
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Hi Lisa
Good to hear from you again. I don’t have skin issues on HP but I believe it is common. My knees hurt though and stairs are especially tricky. I have found that exercise though improves aches and pains. Just my experience.
Wishing you well and hope you improve. Doctors sometimes give us the impression that this protocol is easy- well it isn’t as simple as that as we know.
Liz
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Hi Lisa, gabapentin has helped a lot with the burning and bone pain in my feet. Lyrica is another option for nerve pain. At one point the burning was so bad that I didn't sleep for a couple months before I told my MO, but doubling my gabapentin dosage got it under control again. I want to stay on H&P for as long as possible so I'm learning to live with the neuropathy (which I didn't think H&P was supposed to cause!). Even though I've lost sensation in part of one foot I don't have any trouble walking, but my knees kill me when tackling stairs! Claritan has been recommended by many here for the leg and knee pain and does seem to help.
No skin issues here but there are several who do and will probably chime in on that.
Hope you find a way to ease some of the SEs and feel better!
Lori
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Hi Lori
What dose of Claritin do you take for knee pain please?
L x
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Hi Liz! I just take one tablet - 10mg. It doesn't make the pain go away completely but it does seem to relieve it. I usually try a couple ibuprofen first since it's an anti-inflammatory, then if pain is still bad I take the Claritan. Lately I've been buying the generic loratadine because Claritan gets pricey when you're buying it often.
Lori
edited to say anti-inflammatory. I still try to blame these lapses on chemo brain but it's probably just old age
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Hi all, my post might have got lost, please see below. In the meantime I have seen doctors usually stop herceptin before surgeries and I got it prior to it and 10 days afterwards. Does anybody know why?
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copied:
Had anyone had a surgery while on Herceptin? Had brain surgery and 10 days afterwards I received my 3-weekly Herceptin and perjeta infusion. After infusion I felt as if hit by a bus although I felt exhausted already after the surgery.My experiences after the post-op HP were: increased neuropathy, tummy issues, liver and joint pain, dry nose, even drier lung, vocal cords and throat causing symptoms of a pneumonia. A nebulizer with Dead Sea salt-Walter Solution helped a lot.
As I had my 2nd HP after surgery I had a bloodwork showing all values within the normal range and side effects decreased and are still decreasing except a light pain in liver and joints which keep coming and going. Did anyone make a same experience? Does HP double issues when the body is weak?
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Thanks in advance - C
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Clementine, I had a lumpectomy, lift/reduction surgery and gamma knife twice to my brain while on Herceptin and Perjeta with no issues. H&P was not delayed for these, as it fit within the current schedule (not a couple days before or after surgery).
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Re: stopping H&P before and after surgery - There was a study published the end of last year which indicated that Perjeta, not Herceptin, may interfere with wound healing. There was a higher rate of infection and surgical site complications in patients who were on the neoadjuvent combo of H&P and had breast surgery immediately following than there was in patients who had just Herceptin monotherapy. The concern is that suppression of the HER2 protein may affect the integrity of the skin. No clinical guidelines yet until more studies are done, just a recommendation that surgery be delayed if the patient has other risk factors.
https://www.facs.org/media/press-releases/2017/bre...
There was an earlier (2014) preliminary study which stated belief that adding Perjeta to Herceptin caused an increase in skin and nail infections, calling it a "previously unrecognized toxity" but I couldn't find the follow-up to that one. It seems there are some valid concerns in how Perjeta affects & changes our skin, which can lead to other complications.
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Hi all: I am on H&P only. I just dropped Navelbine. I feel fine except for the big D on Perjeta and lots of tiredness. I was diagnosed Stage IV almost two years ago. Mets to lung and chest nodes. The most disturbing being 2 nodes on the Aorta. It was found right after treatment. The funny thing was they killed all the cancer I came in with on my 3C diagnosis. The H&P didn't help then. It was all surgery and radiation that helped. I am concerned that I am not responsive to chemo. I progressed on letrozole. Positive thoughts!
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Hi all
I don’t have experience of HP and surgery but may do in the near future as I have issues with my knee. I have had a short break from HP though when I had sinus issues and ended up having the loading dose of H after that break.
Fraidycat1954- great to hear you are 2 years out from your dx of stage 4. I too had tumour in my chest. I am due to scan again in Sept. I know what you mean about worries over drug resistance but I believe there are encouraging developments all the time.
Liz
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Hi everyone,
I could use some advice. My eyes seem very dry and hurt. I have been on herceptin and perjeta for several years. I was wondering if anyone else has this, and if so what do you recommend I use? I have been using systain drops, but it’s not helping. Would appreciate any advice.
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Thanks for the responses! I'm definitely having pain in my knees that make it difficult to go up and down stairs, so thank you for helping me think about that. I thought it was from the Lyme disease that I am getting over, which has not been fun at all.
I am currently taking 150 mg of Lyrica for the neuropathic pain. My MO does not think that going higher will help with the walking, and it would likely increase my tiredness, so I don't need that. I will try to see if medical marijuana helps, which is legal and I just got approved for today.
So has anyone had experience with lowering their dose of Herceptin or dropping Perjeta to lessen side effects? I have been on it for 2 years and have scans coming up next month.
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Hi all. I have been on BCO for years but more of a "lurker" on these threads. Just read through the past several months of this one and wanted to add my experience. I was diagnosed 6 years ago with mets to bones and liver; started with Taxotere or Taxol chemo and then added H and P. 4 months of chemo and then continued with H and P. LisaY - I actually did drop the Perjeta almost right away because of the side effects, although I honestly can't remember what they were. My oncologist wasn't convinced it helped enough to offset them. I have been getting Herceptin all along and have been NED for the last several years. I have even taken some Herceptin "vacations" for 5-6 months, just to give my body a break. I also get XGeva… for a while every 6 weeks and now once a quarter. I try to stay very active; run, hike, bike, etc... travel a ton with my family and work fulltime.
I have recently noticed that I am way more tired than usual.... I have scans coming up in Sept and of course, am freaking out because I am worried that the other shoe is going to drop, although I am also wondering if it's just that I have been on Herceptin for so long and perhaps that is affecting me. I also have dry eyes (Reneeswan) much of the time. Never thought that it might be connected to Herceptin but perhaps it is. Has anyone else every heard of increased fatigue after years of treatment? Other than that, I don't have lots of SE's from Herceptin only... I sometimes feel a little flu-ish after the infusion and I do get abdominal muscle cramps if I don't drink enough water. Anyway, I feel very lucky to have made it this long with a fairly good quality of life, so I can deal with a little fatigue.... but just wondering. It seems to be getting worse! My oncologist reminds me in every visit that I am getting older (now 51) and unlike most of my friends, I am HAPPY to say I AM getting older, so maybe age has something to do with it.
I'll try not to lurk as much and participate more! Thanks for the support and encouragement!
Andrea
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Clementinec, I’ve had two surgeries while receiving H&P. The first was my bilateral mastectomy about a month after my final TCHP infusion (August 2017). I don’t remember exactly when my H&P infusions were with regards to my surgery date, but I remained on my 3 week infusion schedule, so needless to say I had infusions within a week or so of the surgery. I also had a complete hysterectomy in March. Again, I don’t remember where it fell with regards to my infusions, but I remained on my every 3 weeks infusion schedule. No complications with either surgery.
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Thank you all. The most disturbing has been my lung’s reaction. Although scans were clear I could hardly breathe after the removal of the intubation which got worse after my post-op infusions. I presume as HP affects the lungs and delays wound healing and considering within 14 months I had surgery-chemo&HP-surgery again and started pretty fast after surgery to go back to normality might have been too much for me. I hope with a little more exercise my other symptoms get better
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Hi Andi, I do find more fatigue as time goes on. I am also active and find the best thing I can do is rest in between. It does get harder the more years we are on treatment, even on these drugs which are considered easy to tolerate. Rest when you need to, be active when you can be as you have already done. Sometimes I find shorter bursts of activity spread out through the day are easier than one long workout. They also Supply me with more energy and stamina for the day. I hope you find this helpful.
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ANDI—I am also six years out! Well in September...but close enough! I had taxol and h and p. Dropped taxol. Still on h and p. I also have xgeva quarterly and take an ai...my fatigue is a lot! My oncologist hasn’t told me several times that it can’t be due to treatment...that’s not in the literature. Blah. I want him to be on drugs as long as we have and tell me otherwise grrr! I have similar thoughts (of progression) but so far so good! It has to be the drugs!!! Best of luck on up coming scans!
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KJones13- my six year anniversary is in Sept too! You are right; close enough! Thanks to everyone for the encouragement. I just think the fatigue has to be the years of drugs..... I am wondering if I need another little "vacation".... but then of course I think I am jinxing myself and that probably I should just continue. I am grateful (as grateful as someone with cancer can be) for my NED journey so far. I feel like I take very, very good care of myself but I think I am going to step it up even more... more relaxing, baths, yoga, etc. More sleep, actually, although I get way more of that then I used to too!
XO
Andi
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This just popped up on my Facebook news feed today. Been feeling like I'm just waiting for the other shoe to drop and the herceptin stop working. Just trying to buy time here. I'll be 4 years in the end of November, have been NEAD for almost 3 years...
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Hi luv2fish
Thanks for posting. You are doing really well being NEAD for a long time. I have been NEAD for 18 months. It would be great to have another treatment in the pipeline.
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Thanks for posting that info luv2fish, looks promising. I know that one of the documented side effects from studies done on creatine in the 90s (as a nutritional sports supplement) is weight gain. I sure hope they figure out a way to limit that when this progresses to human testing! Now that I'm back on my feet, it seems that the more active I am (walking, swimming, strength training, Qigong), the more weight I am gaining and I'm starting to wonder if I'm one of the small percentage of people who gain weight on gabapentin or if my treatments have just changed my metabolism.
I'm not NEAD but H&P has been keeping me stable, so I hope to be on it long enough for a 2nd line treatment to be discovered.
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LoriCA I've also noticed weight gain, but in my case I think I'm getting muscle back, I am way overweight either way, but after 2 years I started getting bored and started a PT job at Menards, when I first started there I had to put school supplies away included were boxes of notebooks and I had to put them up above the displays because they were going into Overstock and I just about killed me those boxes were so heavy. This year when it came time to do school supplies those boxes were like nothing and it's amazing how good it's been for me to get a more physical job I was a mechanical drafter before cancer.
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luv2fish I wish I could say mine was muscle. Although I am getting stronger again now that I have use of my arm back and doing strength training again, most of my weight gain has been in my mid-section even though I eat a fairly healthy diet.
I'm up 12 pounds since my DX, and I know that may not sound like a lot to some but I have a small frame and every 5 pounds is a dress size on me. I probably wouldn't mind quite as much if it wasn't all in my waist, but I need to figure out what's causing it and get it under control before I have to buy a whole new wardrobe. Even obsessive crunches aren't taming my belly! I may have to try strict keto for a while to see if it will reset my metabolism.
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LoriCA - I have the same problem with weight gain, and I have been trying to figure out if it's Lyrica (I am on a low dose for neuropathy. I asked my onc about switching to Gapapetin and she told me it would also make me gain weight) or if the years of being on drugs have also slowed my metabolism down. Like you - I am very active, and I eat a very healthy diet. I come from a family of very active, skinny people with high metabolism, so it's not hereditary. And while I am getting older (just turned 51) I have plenty of friends that are my age and older and don't have this issue. Mine is in my hips and thighs, and it is driving me crazy… I can't get rid of it. I have talked to my oncologist about it but not surprisingly, she doesn't have a lot of sympathy as I have been NED for so long.... I AM so grateful and I don't blame her for feeling that way, but still frustrating. My goal is to incorporate some other exercise - yoga and swimming, which I don't normally do to see if that will help at all. I am also up about 12-15 pound from my "normal" weight... mine has sort of crept up over the years. Anyway, I understand! If you find a solution, please let me know!
XO
Andi
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Thanks Andi. My weight gain has been over the past 4-5 months. Since I already went through the menopausal weight-gain issues a few years before my DX (I'm 54, went through menopause a bit on the early side) & had it under control I don't think that's the cause, and I haven't been on any hormonal therapies to blame. My oncologist doesn't have much sympathy either - he says I look strong and healthy haha - maybe I should stop wearing loose tops that hide my growing belly to my appointments! Maybe my age is just finally catching up to me...
Lori
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