HERCEPTIN and/or PERJETA Threads
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Welcome 2ndtime4me!
Thank you for the kind words regarding my avatar.
For me, the side effects of Taxotere got increasingly worse with each treatment and discomfort was amplified by the Neupogen shot for 5 days each round. By the third treatment nothing tasted good and I had to force myself to eat. Not an easy task. I made sure I had lots of fluids though. No stomach issues. Neuropathy in my hands and feet. Fortunately, the neuropathy subsided a few months after treatment. Oh and I had ticks all the time in my eyelids and my upper arms. Crazy how your body reacts. I'm pretty proud of myself for getting through it as I am pretty wimpy. I would never admit to being wimpy to my family, just to you guys.
Thinking of you all ~ Karen
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Love the wimpy label, Karen :-) I think we all have that brave side for ourselves(and the rest of the world)-thank God-how would we ever get through this stuff if not, but it does feel good to be able to let it go w/our sisters...love you all!!
Ahhh...I remember eye ticks too! I didn't have any neuropathy my first tx w/tax as stage 2, but maybe because it was only 4 tx...I think as stage 4 you have many more, leading to more chance of nerve damage...but tumor damage too!!!
Shutterbug...I have to tell you when I went off chemo, I felt buzzing in my pelvic area...it made me crazy!!!! I told the onc, (my 1st meeting w/him after my old onc got sick), thinking he just my think I was a lunatic (is that an acceptable word nowadays?), but he said it's a sign of nerves regenerating. I'd started chemo while diep was still healing and going off made the nerves come alive!!! So, think it might be your foot nerves saying thank you!!!
Just picked 20#s of blueberries w/DD and grandsons...in less than 2 hours. Only did 2 bushes...spectacular! I'd make you all blueberry buckle if I could!!!!
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Blueberry buckle - yummmmmy, Ronnie. Virtually enjoying this as I settle for a dumb cookie! Fondly, SUE
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RonnieKay
What the heck is blueberry buckle? Blueberries with a buckle?
Yummy recipes I'm always interested in. Ann0 -
It sounds yummy. Is it like Blueberry dumplings??
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Hi Everyone, I had my second round of TH&P today. I discussed my SE with my MO. She thinks the SE I'm experiencing are from the steroids so she cut my dose in half. I'll let u know if the SE r better. Just thowing this out there in case someone is having the same SE as me.
In other news I read on a food website that blueberries are recommended eating when on Taxoterrible. I'll post the link later when I get home.
Sweet dreams everyone. Tomorrow is going to be great day.
Dana
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Have a great day TX. Hope your second round goes without any SE's.
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"Taxoterrible" - I love it! Hope your next treatment goes well, tx. SUE
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Hi Everyone, Thanks for welcoming me. My steroids have worn off I am day 4 of first tx THP. I sure hope this knocks down my lymph node mets. Second time with Taxotere with me, so praying I can get thru six doses without to much Neuropathy. Eating bland foods. Stomach is dicey. Enjoy your day!
Sue
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Hope things go well Sue (2nd)! I hope this round is a breeze!
Just got back from my Neulasta shot and so far feeling good. I am going to take the decadron for another 4 days in hopes it prevents my previous rash from returning (taxoterrible).
I purchased of those Icy Hot tens units for my shoulder pain(not related to any severe sx from neulasta or chemo). and it seems to really help with the shoulder pain that intensifies post chemo.
I really hope the ten works as I am not ready to go on narcotics . I hope to be around for a looong time and would rather start narcotics when other otc things stop working.
Taxoterrible..love it!
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Just stopping in. I can see several new people have checked in.
One thing I would recommend is to sign up on the Perjeta website for their support group. They have a phone number you can call to speak to a nurse with oncology experience.
The other thing that's kinda cool is they will send you a cookbook with several great ideas about what to eat during various stages of treatment. The book is free and they will overnight it to you (mine came via FedEx). One of the best ideas they have is making fortified milk, then using it to make milkshakes. It's inexpensive - cheaper than Ensure or Boost - and gives you lots of protein. Whenever I couldn't tolerate anything else, I could always drink a milkshake.
I think that our oncologists are still learning what to expect from this protocol. But Perjeta is very careful about listing side effects from Perjeta. Most of the side effects they list are for the trio of THP.
When you finish the Taxotere, the side effects are expected to resolve.
And that's been my experience. I have been off Taxotere for two and a half months. I am still dealing with neuropathy, but it's much better. I know from our friends on the Taxotere thread that the neuropathy may take several months to resolve. I sometimes have diarrhea after an infusion, but I can usually look at my diet the day before my infusion and find the culprit. It's usually something with too much fiber or too stimulating. I get a runny nose from time to time.
What I find is that I feel so good the week before my infusion that I think I can eat the way I used to. But my body says No.
I would suggest that all of you sign up for the cookbook at the Perjeta website. It's really handy.
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Thank you for the info Pwil! Going to go check it out.
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thanks pwilmarth! hadn't heard of the site - great idea!
meanwhile, could google blueberry buckle, but having too much fun imagining the possibilities --- thanks RonnieKay, lovvve enjoying tasty treats vicariously!
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These chemo se's mess up the taste of everything. They tasted a bit chewy and had no flavor.
Of course this one had that metal flavor thing going on.
I sooooooooooooooooo googled.
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Oh Freygea - It took me a minute, but once I got it I laughed and laughed!
Hope the real thing was tasty!0 -
Hi Lovely Ladies!
While we are on the subject of SE's, I recently started experiencing one weird one: abdominal water retention. It's listed as a side effect for taxotere and it came in rather suddenly for me.
Has anyone else experienced water retention on the taxotere? I will mention it to my onc on Monday. It's not just the bloating but I'm actually retaining water!
Sorry for the brevity; I'm typing from my phone!
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Hi Macy!
I notice it for about 5 days post my chemo session. I try to drink more water and urinate lots. It goes away so the doc can only go by how I describe it. Mine is in the upper stomach area when it happens. To be honest I end up looking "doughey" for about a week post chemo. Fingers,feets,face,upper abd ...you name it.
I would mention it to your doc. Mine is not worried about at the present time. I take steriods so I am sure that is contributing to mine.
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Noticing some peripheral Neuropathy today. Funny it is day 6. Note my hands are getting ready and a bit itchy. I am going to be so upset if I get my rash back. Placing ice on them. Taking Decadron. Zytrec. Benadryl.
Shutterbug- I am going to color today ..hope I do not irritate my hands but thinking keeping occupied is best. If you see this what do you color with that you enjoy the most? crayons,colored penciols,gels .
Any type of brand I can strive for?
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Hi, I have the same coloring book. I use the colored pencils but I think I would like gel pens better. Does anyone get really bad heartburn after treatment? I seem to be getting really bad heartburn day 1-4 after treatment. I've been using Mylanta but am wondering if anyone has found something that might work better. Thanks XO
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Tx- I do . It starts as an upper sourness and turns. I start ranatitidine over the counter (Zantac) on day 3 post chemo and it keeps it down. I take it for about 5 days. I do not do Mylanta as is contributes to diarrhea.
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I'm happy to hear the coloring bug is contagious! For years I used Prismacolor pencils. I would replace favorite colors as they wore out, but they are quite pricey! My mom found a set of 72 Cra-Z-Art pencils at Walmart for $5, and they are quite nice so I bought myself a set too. I have gel pens for the really detailed stuff, but be aware that they will probably bleed through. So far I think colored pencils are my favorite (or maybe just what I'm used to). I've tried watercolors too, but the paper in most books is not quite right for watercolor.
Have fun!
Freygea - Hope that rash stays far away!
Txmom - I had heartburn on the taxotere as well as problems with my esophagus from radiation. My onc put me on daily OTC omeprazole (20mg), which helped a lot but took about 2 weeks to start working. I tried going off of it recently, but then I went to a late-night party with Indian food and there was no sleeping that night! I've decided just to stay on it for now.
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Thank you so much for taking the time to let me know what t try Shutterbug. I have some colored pencils. I am going to look up the brand you recommend. I have some oil pastes that may be fun for larger (less detailed) pictures.
Thanks again.
I guess i will find out in a month if my MO is going to continue me on Herceptin after this last Taxotere dose. he says he can only continue it for a year correct?
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Hi lovely ladies! Freygea, thank you for the reassurance about the water retention in the tummy. Mine comes and goes. I mentioned it to my onc but he was not real concerned once he examined me.
I got the results of last week's PET scan today. It appears that TPH is not working all that well for me. In all honesty, I am kind of numb. emotionally. And here, this was the protocol that was giving so many ladies 5+ years of progression free survival. It appears to have barely kept my lung mets in check after 4 treatments (I was supposed to have 2 more, including one today)
I should have known I would not fall in the average category with this protocol...I haven't so far since this whole fiasco began 2 years ago. Everything has been not normal for me.
So, I am likely on to Adriamycin, which is what is suggested to me. I have to do some further research and make some calls to my cancer center. It is not close by so I confer with a local oncologist for the day to day stuff. I did not do Adriamycin the first time around.
I know it is a harsh treatment.
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Oh Macy. I am so sorry you have had to go with a tx only to find out it is not living up to what it is supposed to do for you. I wish I could be more comfort to you. I will be thinking of you . Wish we could all do more.
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I've been in wheat fields at my sister's house, helping her out after my BIL had an accident & injured both legs. Twelve weeks off work & no bending a knee. He's a firefighter/rancher...w/cattle....so she's swamped w/home & animals. DH kept their 9 & 11 yr old BOYS at our country house 35 miles away while I helped at sister's & she asked if we could keep them and bring them just for visitations...lol!!!! Anyhoo...no cell coverage/internet/tv/ microwave...not religious reasons, just believe in good old hard work & natural living...I about croaked!!! I need you & Hgtv :-). And I'm buying a color book & going to walmart for pencils!!!! I'm totally excited!
Macy...I'm so sorry THP isn't the right mix...there will be one! I know how emotional this must be...like Freygea said...wishing we could take some of the sadness away. If your lung mets didn't get blasted...is it too late to mention Navelbine? It's known as a lung protocol & it worked for SUE & I. There are others on it...it's a white cell buster for most, but it can be successful (praying stable for a long time!). I didn't have red devil first go around either, since no lymph involvement. Just a suggestion...as far as ses, it's an easier one. Praying for healing!
Freygea....OMG.... Love the buckles :-). I soooooo google for everything too...oftentimes a laugh!!!! I'll post my delish recipe...heavenly...and so healthy (no counting the flour, sugar & butter) w/blueberries & cinnamon :-)
Scans Thurs....nervous nelly but hoping & praying. My onc is gone Aug but will see his fellow & he likes me :-) Gotta go rescue an awakened Grandaughter. Today she sang...Tomorrow, Tomorrow, I love ya, tomorrow. She's 21 months old...makes me smile! XOXO to all.
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Macy I am sorry to hear about your PET scan. Will be keeping you in my prayers.
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Macy, so sorry to hear you're not getting results from thp. checking with your cancer center regarding next treatment is a good idea - we're all so different and there are so many possibilities. fwiw, I'd understood that tdm-1 is often next up after thp for her2+ only.
it's so so hard to stay positive sometimes. sending virtual hugs and support to help you hang in there until your next plan gets worked out. I hope your next treatment is the right one for you and turns out to be less harsh than anticipated. I'm with Ronnie, there will be one for you!
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Sorry Macy. That's hard. When I'm feeling down I read parts of Radical Remission or stories on the website. ((hug))
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Hi Lovely Ladies
just wanted to share my tough last two days. Sat & Sun I spent my time moving my young adult daughter into her house. husband & son helped. I am one week post THP loading doses. I came home last night feeling ill & had a fever 100.8. I took Motrin went to bed & woke up with the back of my throat On Fire, painful & the feeling that my throat was swelling shut. My Son drove me to ER. Got IV Steroids, IV pain meds, and requested IV fluid. Thank goodness it worked. I feel better. WBC ok. Very Scary so glad didnt have to stay.
Macy I am so sorry to hear about your scan. my prayers are with you. I bet they use Kadcyla on you.
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Sending love, Macy. Now it's time to move on to the next BETTER drug for you. There are so very many good treatments now, there is one with your name on it. One step back, two steps forward, just like a cha-cha (right Ronnie girl?). So many of us have done that same cha-cha - feel the love, Macy, your sisters are with you and cheering you on. SUE
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