HERCEPTIN and/or PERJETA Threads
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Fantastic news Reneeswan. I agree, a great Easter gift!!!
Shutterbug - I bet you were the tech's favourite patient today. Laughing is such good therapy.
I met with my oncologist last week before treatment. Since my tumour markers are stable, we decided to put off my three month scans until June as long as my markers don't rise. I told her that I get so anxious prior to the scans and scan results that putting the scans out further works for me if it is not essential to have them done.
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Wow, that's what I'm liking to hear - good news all around. Best news ever Reneeswan. Putting off the scans because you are doing well is also reason to smile mikarae, and keep 'em laughing Shutterbug. You girls rock. SUE
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So glad to hear about your mom Jmo06. That is a wonderful gift.
I have gained weight post- chemo. I can't do up the buttons on all my pants I wore a year ago. I have a small appetite and for the most part have a low carb and fat diet. I practice yoga 5 times a week. I have always been underweight so this change is very uncomfortable and not anticipated. Have any of you gained weight while on Herceptin and Perjeta only? I guess the weight gain could be the result of the chemo induced menopause.
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Hi, just wondering...did anyone here just do H+P without ever doing the taxotere? My oncologist said this was an option for me. I really don't want to do the chemo but I know I probably should/will. I just wondered if anyone just avoided the taxotere altogether?
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Yes mikarae, I have put on about 10 new pounds since dumping the navelbine (maintaining on H&P only). All of my clothes are tight. I was not particularly overweight in my adult life pre-cancer (size 12 or so) but have been really skinny for the last 4 years. And when I felt well enough, I enjoyed being thin.
Now I find myself worrying because I have put the weight back on - good heavens, what's wrong with me? I cringe when people ask "Have you put on weight?" Geez! I would call myself a feminist, and I can't believe that I am buying into "the thinner the better". Daughter says I look healthy for the first time in a long time. AUGH! This disease makes me crazy! Love, SUE
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mikarae yes mom has gained 10lbs eats good and excercises but still hasnt lost- side effect maybe???
Macy havent heard of someone not going ahead with the chemo unless try holistic medicine
Great news ladies mom started treatment in September finished chemo in Dec, on H&P since on Monday was officially declared NED woo hoo. She is Stage 4 so this was such great news!! However mom will still be on H&P for life.
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Macy,
Given what I know now, I would have asked for just the h&p, no taxotere. I had mets to liver from the beginning. Was scheduled to do 6 rounds of all three but had to drop the taxotere after 3 rounds because of bad reaction to it. I've been getting the h&p every three weeks since then for the last year. A year out, I am stable. Tumor in breast is nearly gone. 3 spots left in liver that are much smaller and currently being considered for a clinical trial for stbr to the liver.
Of course, hindsight is what it is. I know what you mean though, do I do it? Will I regret it? Can you ask your onc what if you want to add it at a later date if there is progression? I'd also ask if scans every three months is a possibility.
Good luck. Your question about treatment is the kind of thing that keeps me awake! Right now, I'm obsessing about sbrt to the liver. It's great if it works, horrible if you happen to be the person who doesn't. Blerg!
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I have gained weight too! Although I think mine is due to the amount of sweets I eat...maybe 90% sweets 10% h & p...and I have a huge family reunion at the beach in 10 weeks! Oh well.
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Thank you for confirming I'm not alone with the weight gain and making me laugh!!!
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Hawkeye, thank you so much for responding! That is exactly the type of experience I wanted to hear. I know I "should" do the taxotere and in all likelihood I will. As it is, I had my first infusion with just the H+P (no taxotere) and my 2nd one will be just H+P as well. I'm having to do some traveling-for a vacation and then for a second opinion and I don't want to be all sick on taxotere while I travel.
I'm glad you're stable. That is good news. What is srbt to the liver? I pray for continued good luck with treatments for you. It looks like your pathologies are somewhat similar too.
My mets are in my lungs. I guess I just wanted to hear if anyone had at least stayed stable (or better) on the H+P combo only. Surely there has to be other women out there who didn't do the taxotere for a variety of reasons. I can't seem to find much research on the subject. Thank you again, Hawkeye!
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Macy, I'm sure a big part of you is really considering sticking with h/p for now. At least until after another scan to see if tumors are responding. And especially since you've already had two rounds. Good luck in your decision!
SBRT is like cyber knife. Which I understand it to be like a trademark name for a type of radiation therapy. I might be wrong but I think it stands for stereotactic body radiation therapy. It's a phase 1 clinical trial, and they are trying for just three rounds of pinpoint radiation to specific spots. Just found out I passed the first qualifiers and am scheduled for MRI and PET of the liver to see if I can continue. I have a few pages of questions to ask my doc the next time I see her! One of which will be....do the possible side effects outweigh the benefits. Since I've somewhat wrapped my head around the idea of treatment for life, I'm all about quality of life. Yanno?
Good luck in your decision. It's a doozy. Let me know what comes next, will you?
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So happy to read on another thread that your scan results came back as stable Shutterbug! Time to celebrate. Hoping for stable or NED for all of us. ~ Karen
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Thanks Mikarae! Yes, although I would love to see a further reduction in my breast tumor, I am very relieved and happy with stable. My Onc wants to spread scans out to every 6 months instead of every 3. Although that makes me nervous, I take it as a good sign. I hope all of us H&P ladies continue with good results.
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I can't believe this! I'm up 10+ (this am-14!!) lbs since, as SUE did, dumped Navelbine! Am I the only one blaming femara? I had gained on it before and when I started seeing the extra lbs, and found myself eating more & adding sweets, choc almonds for me, Kjones, & carbs (that I'd easily given up to be healthier-save my liver!)...I started getting scared...and still am. Like you, Sue, I was feeling really good at smaller sizes, but when I started gaining, the fam said I looked healthier. I think it was an overall healthier "off chemo" look.
Shutter...Fantastic that your onc is pushing scans out...and I say that as someone whose onc has pushed them out & is nervous about it! So happy you can get a tickle outta your echo...laughing is a gift! My guy says I have beautiful rhythm
Hearing such good stable & NED news...if my onc talks about stopping perjeta, as he mentioned in Jan, I don't know what to do. I saw my rad onc last tx (haven't seen her since 2011 mast) & she said she loves seeing how perjeta has worked.
I'm going to read about Miche's study, wondering if it's turkey tail mushroom. You're being treated at my "home" center so if/when you're in the Emerald City again, maybe we can meet up!
Have a good weekend, all! It's yardwork at our "country home"...which sounds a lot more fun than it is!!!
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Just wanted to let all of you H & P ladies know that at my last PET scan in March, I was able to attain NED status. I had so many liver and bone metastases everywhere originally that I considered myself lucky if I could just get to stable. I say all of this with very guarded optimism and with a great degree of humbleness, but I believe that Herceptin has with my first and second diagnosis been a Godsend. Perjeta is so new that the jury will probably still be out for a few years yet on its effectiveness. I have had nothing in the way of noticeable side effects and have lost close to 40 pounds overall since my first diagnosis. I walk four miles a day, splitting it up in the morning and evening, as well as modifying my diet to try to help keep cancer at bay. I am so truly grateful for the research and medicines that are out there to help us, and I believe that, although we need a cure for cancer NOW, it seems to me that more and more answers are being uncovered every day on what makes cancer tick. Hopefully, a more definitive answer comes very soon! My love and best wishes to all
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Oh Teakie that is wonderful! So happy to read those magic letters N E D! Fantastic
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Shutterbug: Thank you so much for your kindness! My NED status may last a week or maybe a few years, but I'll take whatever I can get! Ann
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Oh Ann, I am so happy for your news. I feel strongly that good news for one of us is good news for all of us, for so many reasons - congratulations.
And Ronnie, I know what you mean about putting off scans. It's a comfort in one way (we are doing well!) but so stressful in another - no easy way either way.
My scans are due in June, after my "big trip" -I think I may wait for my doc to bring them up. Then I guess I am going on over to the Waiting Room thread, butof course, will also be leaning on my H&P friends. Geez, what we have to do... Love to all, SUE
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Yippee Ann! Love to hear such great news.
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So happy for you Ann! Thank you for sharing the good news. ~ Karen
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Well ladies, I just got back from the eye doctor. It turns out my prescription has hardly changed a bit! He thinks it is my dry eyes that is causing my perceived vision changes. He hadn't heard of any vision side effects from H&P, but he did say that Tamoxifen can cause spots to show up on the retina, so something to keep in mind.
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so moms NED card got pulled too quickly... drs did a brain mri and found she had 9 small tumors..the sub dr said brain mets common for her2+ patients If you havent got a scan yet talk to your dr about it. mom had zero symptons =(
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jmo, I'm so sorry to hear about your mom's brain mets. May I ask...does she get regular MRIs? My Oncologist said he wouldn't do an MRI unless I had symptoms or my tumor markers start going up. I hope her doctor has a treatment plan for her soon. Give her our best and please keep us updated
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Shutterbug73 thanks. no this was moms first mri, they said did it because standard procedure for patients with IBC. When they did it, I had zero concerns and thought was just one last double check, as mom had zero symptoms. Later they told us that brain mets are common for patients with IBC and her2+. We are all stil in shock. Plan is brain radiation, moms a tough cookie never complained during chemo, surgery, rads to breast but this she said is just awful =(
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Hello - just checking in and giving a quick update. I had my 20th infusion of Herceptin/Perjeta Thursday, April 23. Ran both over an hour and a quarter. The difference between this treatment and the 19 previous, is that, I had an extra bag of fluids afterwards. Unfortunately, I have always had side effects (bone and muscle pain, fatigue, runny nose etc.) from the Herceptin/Perjeta infusions but this time...muscle and bone pain and fatigue reduced by nearly half and no runny nose! I have no idea if it is a coincidence, but I am going to request the extra fluids for my 21st treatment to see if the improvement continues.
Sending you all cyber support and admiration.
Karen
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Tuesday was my 56th infusion total--minus 12 that was taxol only and it is #44 for h and p! I have recently been getting more and more fatigue. I was super depressed a few months back, but with that in check, I know it's the meds. I also have nausea every once in a while. And random days where I just don't feel good. That being said, I am thankful for these drugs and what they have done for me so far!
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Karen - perhaps you have found the magic potion to keep the SE's at bay. Let's hope so, especially if it is something as simple as extra fluids!
Kjones - I'm sorry to hear about your fatigue. Is it constant or does it come and go depending on where you are in the H&P cycle? I'm tired quite a lot too...fine in the mornings but ready for bed about 2 hours after getting home from work. I've been blaming my old cat who wakes me up between 4 and 6 every morning and my young cat who wants to snuggle around 2 am, but I wonder sometimes how much is the H&P or if one of the meds is also disrupting my sleep patterns (tamoxifen?).
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shutter--you are working!...so you should be tired! Plus everything else...and oh yes I know that specific meow during the middle of the night that means "human, let me out now!" Haha! I haven't really been able to find any patterns. I am also on tamoxifen but not sure what side effects other than hot flashes I have from that. I felt great on Friday. Really good. Did a lot of running errands over the weekend and I'm whipped today. I just wish I could have some kind of idea about what is a normal amount of fatigue. Still...just glad it's that and nothing more.
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