HERCEPTIN and/or PERJETA Threads
Comments
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Hawkeye, to hear that the lady who went on the first HER2 trial is alive and well, despite having her liver at one time covered in mets, is so encouraging. Thank you for letting us know.
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Love to hear these Inspiring stories! Keep it up!
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Hawkeye - Like you, I was diagnosed as stage lV right from the start. I managed 6 out of 8 taxotere treatments. Been on Herceptin/Perjeta treatments every 3 weeks since June of this year.
Thanks for sharing Ginger's story. My hope is that we all have the same results as Ginger.
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wow, Mikarae. 6 out of the 8! Because of my rotten experience with taxotere I'm always amazed some of us go for much longer. I see by your bio you had surgery as well. I didn't and don't see that happening. I learn much on this board, especially that we are all different in our treatment. Do you mind if I ask why you stopped at 6?
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Hi Hawkeye - I stopped the Taxotere because of toxicity. I couldn't even climb the stairs to our bedroom. I crawled. Had terrible upper back and shoulder pain (I still do), non-existent appetite, dramatic weight loss, neuropathy in my hands and feet. By the end of the Taxotere treatment the skin on the inside and outside of my cheeks were completely numb. It was scary. Did you have similar reactions to the Taxotere? I think the Herceptin/Perjeta treatments are also causing the pain in my shoulders and upper back. Also, my joints are so stiff in the morning that I can barely walk or open the shampoo bottle without taking medication.
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anyone doing H & P weekly?
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My H&P infusions are on week 1, then 2 weeks off (nice!). I think that this is the schedule usually prescribed. I too would like to know if anyone does a different schedule. SUE
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Sue: I do Herceptin and Perjeta every three weeks and will indefinitely. Made it through the whole regiment of Taxotere without any noteworthy problems.
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Mikarae, I hope your body heals quickly from taxotere! Geez, you had a tough go. I experienced much of what you posted. The day after the third dose I knew something was really wrong. I started all over body swelling. I had fluid everywhere. Even my eyelids! I could barely move fingers, toes, my knees. Think Jabba the Hut and that was me. Neuropathy in hands and feet really picked up then. Over the course of many months without the tax I've gained stamina and less muscle pain and the neuropathy has weakened. Which is good because I'm a massage therapist! I went back to work with limited hours in June. I'm almost back to my regular schedule and plan on that in January.
The center where I am treated has a wonderful PT dept that helped. My onc referred me there and I saw a therapist 2x a week. She helped me gain mobility through wrapping my legs (tough to do when you can barely bend your body!) lymphatic massage and exercise. The center also has yoga classes. It took nearly 2 months to lose the extra fluid. I think at its worse I had gained 30 pounds of excess. Belch!
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Hawkeye - You've had a tough go as well! Sounds like you have a great physical therapy department. I try to practice yoga daily. Yoga has definitely helped me to remain centred (somewhat) and stretches out my achy shoulders and back.
I work 6 hours a day 5 days a week in an office. The desk work aggravates my shoulders and back. You would know all about that in your profession! I see a massage therapist every two weeks for either massage or lymphatic drainage.I was so happy my onc agreed to move my Christmas Eve H/P treatment to the next week. I always feel tired the day of treatment and "under the weather" for a few days after.
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Good move, mikarae, Christmas Eve is no time to have to get a treatment. Great idea to "forget about it" until after Christmas. Best to you, SUE
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Thanks Sue! The best to you...the best to all of you. - Karen
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hello everyone I have the DVD of the Herceptin trial documentary and watched it when I was first diagnosed
It made me cry gave me hope I was in awe of these brave women and their stories
I am so elated to hear this uplifting news of Ginger bless her for her courage
I have been on Herceptin ( my second time) since Aug 2012 and plan to be indefinitely I'm wondering and concerned why my onc does not have me on Perjeta a question I'll be asking when I see him :-)
I also have horrible aching bones joints especially when I get up in the am and then late in the day into night and severe fatigue I give in and take pain meds
I walk 3-4 miles prob 5 days a week try to eat 50-60 grams protein but have days when the couch is my best friend
Anyone else feel this way ? I think it is from Herceptin so be it!! I don't ever want to go off it but reading about you all on Perjeta I'm concerned I should also be on it
Thanks for reading and especially sharing your story about Ginger
Take good care everyone
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Sue...I'm happy dancing! Really am so thrilled for stable!! It feels good to be walking the walk together. Thank you Navelbine...and now...austa la vista! My onc didn't give me a time line for a restart on chemo...he's pretty hopeful that if the buggers reappear, there will be something better for us...wouldn't that be awesome!!!
Lovecat....my sister read the book about the discovery of herceptin & I'd like to check out the DVD. I'm also on herceptin for the 2nd time...first time I didn't have any ses until I added femara. Aches were for a couple months and then gone. This time I thought I noticed a bit of back ache, but had done a few more exercises and now feel pretty good. I went off Navelbine on 10/22 so have had her/perj & femara only twice (also have the 3 wk schedule). My foot neuropathy is improving but my eyesight seems to still be deteriorating-ugh-I see eye doc again tomorrow (after new specs in August!). I'm also a walker & try to keep my weight down (femara doesn't help me!) but I also have those days where the couch is my friend...but I sometimes think my fatigue is mental. Good ? about adding perjeta...I'll be interested to hear why you aren't taking it...although my onc is plotting to drop it, and I'll be asking why
Mikarae & Hawkeye & Teakie...I had only 4 infusions of tax my first go-round-stage 2- & did well but was ever so glad to see it go. I think when you have it stage 4 you get so much more of it...tough stuff...but gladly now it finds us all together doing something doable...may we all be like Ginger!!!! I like the idea of 70+!!!!
Thinking of all!
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Hey Ronnie! My navelbine twin (goodbye to all that for us!). Just wanted to let you know that my vision got worse every six months or so on the old regimen - had to change my glasses every six months to drive ($). Hmph - was hoping it was the navelbine and not the H&P. Would be glad to know if vision improves on H&P only. The herceptin DVD is wonderful and so is the gorgeous Harry Connick Jr. The excellent Apple, who wrote on this board before she passed away, used to talk about "Dr. Dreamy" - love to all, SUE
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RonnieKay - I am interesting in knowing why your onc is thinking of dropping the Perjeta. Please let us know when you find out.
lovecat3 - I also have terribly stiff and achy joints. I can barely get out of bed in the morning and when I do it's a struggle to walk until I loosen up. I do a practice of yin/hatha yoga about 5 times a week and it must help. Can't imagine how bad it would be if I didn't practice yoga.
Love to you all,
Karen
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Aw, doesn't anyone want to join me Christmas eve for H&P infusion?! The nurses are hoping I'm their last patient so they can go home early but while we're all still stuck there we're going to have a little party. I usually go visit family about 45 min away but this year I rescheduled that to the weekend before, so we can have Christmas Eve family movie night just the 4 of us with take out food so I can hang out on the couch and get my post infusion aches over with. Compared with all the running around that goes into getting ready for Christmas, I'm almost looking forward to it!
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I am wide spread stage iv breast cancer dx June 13 of 2014. In August I began the perjeta and Herceptin infusions. I have had a lot of problems with diarrhea and weight loss. I declined chemo. My hair has thinned out a bit. I now have shingles. My white blood count is low. I am wondering if Perjeta is more than an antibody. It sounds like side effects from chemo?
I do not want to take chemo. If I am stage iv and there is no cure then quality of life is most important. I thought Perjeta was only an antibody like Herceptin. I hate cancer treatments. I hate the side effects. I am hypersensitive to drugs and whatever they put in the infusions. I am upset that I didn't know all the side effects from Perjeta! I'm considering quiting it. Not sure. I feel like I'm between a hard place and a rock.0 -
I have infusions Christmas Eve day. It doesn't matter cause I'm not doing much for Christmas. It's been a bumpy road since my dx. in June.
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I am so very sorry H that you have had such a rough go of it. No one deserves to endure one misery after another as you have. All I can offer is that sometimes we seem to swing back and forth between feeling worse and then feeling better on our side effects - who knows why? This disease and treatments for it are not logical. I sincerely hope you get some relief soon - don't give up, my sister. SUE
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Hindsfeet: I agree with Sue. Things like your shingles will eventually clear up, and even though you don't feel good now and look at things from the worst possible side, tomorrow is another day. Many women with widespread Stage IV go on to have a good quality of life for many years. PLEASE know that all of us support you and each other and hope that you start feeling better soon! Ann
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Hindsfeet - Well said Sue. You are obviously a strong person if you made the decision not to do chemo. Stay strong and know we are all here to listen and support you. - Karen
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Thanks...sorry, about reacting. I don't know what do to or how I feel about Perjeta. I'm going to discuss it further with my oncologist. I am now having increased port problem. It has always been a bit sore. I got it about 3 wks ago. Now it hurts to swallow on the right side of the neck where it threads up and around the neck. Seems like there is a growing lump. It hurts to touch it. Is this normal? The shingles is beginning to dry up. I am fortunate I had a mild case. My immune system is pretty shot. I'm taking a lot of sumplements.0 -
Hindsfeet: Make sure to have that port checked out to find out what's going on with it and always be your own advocate about your health. No one knows better than you what you're feeling at any time, so if you have questions, ask your onc. Hang in there. So glad to hear your shingles are clearing up; I've heard they're pretty rough. As far as Perjeta is concerned, I've been on it since June of this year and haven't had any noteworthy side effects to speak of. I take it along with Herceptin as a "double whammy" to help destroy cancer cells. I hope you find a plan that works the very best for you. Ann
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Hello Hindsfeet - My port has just recently stopped being sore and I had it inserted in February. Even now if I press the skin around it, it feels bruised. I occasionally have sharp pains in my neck as well. The surgeon who put it in said there is nothing unusual about my experience. I do think you should have yours checked to make sure there is nothing serious happening or maybe there is something that can be done to make you more comfortable. Glad your shingles are on the mend. - Karen
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Add me to xmas eve and NYE fun...
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I'm off Christmas Eve after seven weeks but back in on New Years Eve for herc/perjeta/and taxatere....I get the taxatere in three smaller doses to reduce side effects but it really screws up my schedule..I'm still thinking of getting one large dose when I get my herc and perjeta...instead of doing the way I have been...Only thing is my hair has started growing back ..( if you can call it that...lol) ..I'm thinking if I got to one full dose I will lose it all again....My oncologist likes the smaller doses better, feeling that a stead dose, continually in your body works better...I just don't know anymore..could use a HUGE break from all of it...The weight loss is a little scary....I've never had this with ANY other drug..I just gained and gained and gained..I'm down about 25 lbs...I like the comfort of less weight, I was always on the thin side until my breast cancer, but I also don't want to get that scary sick cancer patient look....so hard with the wigs, no eyelashes and no eye brows...so weight loss doesn't help much...My doc likes us plump with that steroid glow...lol...Klynn..<3
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Hello Klynn - I'm new to this nightmare. Was diagnosed in Feb, 2014. I lost a lot of weight when on taxotere (had 6 treatments from March to June). Had no appetite at all. I still struggle with appetite 6 months after treatment. When are you scheduled to stop the taxotere? PS - I love your sense of humour. - Karen
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Hi Mikarae...I've been doing the breast cancer thing forever...the perjeta and taxatere are new to me since June....I'm not sure how many more treatments of the taxatere I will have...my oncologist never gives out his secrets...lol...he feels I'm doing great on this treatment so as long as my limbs aren't falling off he will plow forward....I just had to have my port taken out and a new one replaced on the other side..it was almost 9yrs old...it was still working fine, but the vein in my throat was changing colors..Radiologist thinks the vein was just wearing down and eventually would have collapsed or worn through..I honestly thought when I had that ( my second port, starting the beginning of my stage 4 dx) port put in , it would be my last...I guess that's the good news, I'm out living my ports....!!...I was alittle worried about the old port coming out, built up scar tissue and all but it wasn't really that bad...Now the new one going in was a b**ch....feels like I was hit by a bus...I'm going on 14 1/2 yrs now since first dx, and many many drugs along the way...we just have to hope we stay here to run along with all the new drugs coming out.....Klynn..<3. ....
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Klynn - Wow, 14 1/2 years! You're obviously very strong. I don't like having a port. I'm always aware of it. It's still sore 7 months after being "installed". However, I do recognize the advantages to having one. Doesn't stop me from giving it the middle finger on occasion. My recovery from from the port installation was much worse than the bilateral mastectomy recovery. I'd describe it exactly as you did like being "hit by a bus". Taxotere, for me, was like getting hit by a bus then being dragged behind it for 50 miles. Have a great day - Karen
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