HERCEPTIN and/or PERJETA Threads
Comments
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Thank you all for your concern for my DH. Today was much better. We will know in the next 2 days if the balloon procedure worked to stop the bleeding. If all goes well he will come home on on Saturday. This experience has been a good reminder of how difficult it is on this side of the equation too. I don't like seeing him in pain...physical or emotional.
H&P infusion on Monday. I'm almost looking forward to being the "patient" again.
Love to you all!
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Don't know what I'd do w/out you all!!! Shutterbug...hoping DH gets to come home Sat & feels good! Love :-)
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My hair fell out today. I'm a little teary. I knew it was going to happen but I guess I thought that it gradually fell out. Nope. All in one day. Sigh. I'm all caught up on this thread and glad everyone is doing pretty well. Shutterbug, thanks for the watermelon tip. I find water doesn't taste so great on taxotere. Have a good night everyone.
Dana
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Oh dear txmom...a darling avatar. I'm sorry its hard...losing our hair is probably the most visible reminder of this dreaded disease. My guess is that you're probably nearing your 2nd or 3rd tx. I hope you're feeling strong & doing well managing ses. I wore a wig when I went out, but most of the time I didn't look at myself much...I think you're much younger, like Shutterbug, and if you're out in the public eye, I get it. Lipstick, blush, earrings. Are you stage 4 outta the gate. Sorry you have to join our club...but we're just what the dr ordered :-)
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txmom - losing your hair is so difficult. I know it seems like it should be small potatoes compared to everything else we are facing, but it isn't. Hair is the one thing about our appearance that we have control over, and when that control is taken away it can be devastating. Cancer takes so much from us. I hope you are able to treat yourself to some colorful scarves. I learned about Buffs when I lost my hair - a quick and easy solution. You can find them at outdoor stores or cheaper versions on Amazon. My insurance covered 80% of my wig after I asked my Oncologist to write a script for a "cranial prosthesis".
DH is still in the hospital. It doesn't help that he is 40-some miles away in Detroit (because he was at work at the time). I'll be able to see him today, but dr. appointments will keep me busy Mon and Tues. At least he was in better spirits yesterday, we even played some cards. Thanks for keeping us in your thoughts.
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Shutter- always always in our thoughts and prayers.
Txmom, it is truly awful to lose the hair (done it twice). So much of our confidence comes from liking how we look. Maybe it will help to think about when this rotten part is over and the hair is back to stay - this will happen! And the bonus will be that you will have kicked cancer to the curb. This therapy works honey, we just have to get through it. Sending good karma. SUE
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Macy, good luck with the PET scan - we are with you all the way. Do let us know the good news (any news of course, but I know it will be good!). SUE
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Hi, RonnieKay, Shutterbug and Sueopp, thanks for your encouragement. Yes, I was diagnosed stage iv from the get go. Mets to iliac bone and L5. I'm 46. I thought I pulled my hip flexor muscle. Nope. I have only had one treatment. I go for my next treatment on Wednesday. I think I'm doing OK with SE, I had a headache for about a week and I was super depressed for a week ( which I was not expecting). My mouth hurt for a few days. My hip already feels better and my limp is almost gone. I was going to get my hair buzzed off but my DH took me out to a salon in the morning and told the girl to give me something super short and cute. It looks really good. If I can figure out how to post a picture, I will. My avatar is of my oldest daughter and I. She will be a Junior this year. Shutterbug, I like your new Avatar. I hope your husband comes home soon. My husband is from Detroit and we lived there for 8 years after we were first married. Praying we all kick cancer to the curb! XO
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Shutterbug...sending more healing wishes for DH...you must be missing him so (although kitty secretly likes more room in bed). I didn't realize he's not close to home. Glad you got some time together. I'm wondering about your vacation...can you postpone, or are you hoping to still go?
Txmom...sweet of DH to pamper you. Depression & anxiety can sneak up any time...you're going through A LOT...so being aware of it, understanding that this isn't an easy journey but like sister SUE says, it works...and we have to get through it..gives us strength & hope!
We just got a bolt of lightening that made DH & I fly off the couch....just before a walk off home run for the Mariners!!!
Happy Sunday, girls!
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Just stopping in to send hugs to everyone. Sleepy Sleepy these last few days. I have lots of reading to do when i wake up.
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Just got word that DH has been set free. His brother is picking him up since I'm getting my H&P. Here's what I'm doing to keep busy...
Ronnie - we've cancelled next week's vacation plans. Too risky given the hiking and boat tourswe had planned. Depending on how the next week goes we may try for the end of August.
Thanks again to everyone for the good thoughts. Hoping this never happens again!
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Shutterbug:
So happy to hear your hubby is coming home. I know you must be relieved, and I hope you never have to go through that again either. Love your artwork. I just saw something like this on TV--an adult coloring craft book for relaxation purposes. Nice coloring--looks like you stayed in the lines!!!
Try to enjoy the rest of your week with family. Ann0 -
Yahoo!!! Echoing Teakie...such good news, Shutterbug!! I'm looking at your artwork, thinking I'm such a ditz...the older gentleman at the "hospitality desk" knows I like People so he gives me the latest issue when I come in for h/p...I may look for something creative (2.5 yrs later!). Purple is your color...you look so pretty in your new pic :-).
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Great news Shutterbug! I am so happy for your family. And I love your new avatar and your art work!
I thought I should show my face, so I changed my avatar as well.
Love to all ~ Karen
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My post went pooof.
I am glad to see your hubby is coming home Shutterbug. I love the picture. I now have to dig out my old adult coloring books I had ordered about 10 years ago (fairies ,victorian,and celtic designs ..err not all in the same book.)
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mikarae and Shutterbug::
Love your avatars! Ann
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I am on day 14 of my first chemo and I am still so tired and just out of it in general. I went by the MO office yesterday and they did blood work and everything came back good. Do you all think it is the loading dose that is effecting me so much?
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I have been on perjeta, herceptin, and xeloda for 7 months. I have been having a much harder time lately. I have developed neuropathy in my hands and feet. I have stomach pain much more than I used to. My oncologist said both are from the perjeta being added. The combo is working for me but the side effects are so difficult. Does anyone else have neuropathy from perjeta? Any advice on controlling the stomach pains? I would hate to stop something that is working. I have been stage IV for seven years now. I am so grateful for all of you.
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Hi Ladies
I want to join your club. You all seem so nice. I am newly diagnosed Stage 4 & and got my loading dose round of Taxotere, Perjeta & Herceptin yesterday. Neulasta shot today. This is my THIRD time with BC. Going to keep fighting. It is in in my mediastinal & collar bone lymph nodes now. I feel good today, no appetite but that is all so far. Keeping fingers crossed and praying. Married with two college age children & one high schooler. Would love to converse with Ladies who understand, I will be going Bald again😩 second time with Taxotere so I hope it grows back again. I reoccurred six months after finishing my year of Herceptin. So I hope adding Perjeta will help this time. If not it will be on to a different protocol.
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Yup Renee, I have both SEs from the perjeta. Fortunately the neuropathy in my feet and calves is not painful, just irritating. I have said that at night, when it bothers me the most or at least when I notice it most, I feel like I have two wooden pegs from the knees down. But it is not at all debilitating and seems to have plateaued. Good thing too as I can't think of a thing to do about it.
The stomach thing is another story though. This is fairly recent for me (stomach hurt) and it took a while to register as a SE. My solution was to take Pepto Bismol - DO NOT DO THIS! There was some short lived relief, then pain for the next two days. Dr.Opp read the ingredients and found it contains "subsalicylate" which is an aspirin-like ingredient that will agitate the stomach even more.
So in the week right after my perjeta infusion I eliminate orange juice, coffee, black tea, lemonade, spicy stuff and anything else I can guess might hurt my stomach (except for the glass of wine - HA!). I bought some standard liquid antacid (generic Gavescon) and take 2 spoonfuls whenever I want to. By the second week I am mostly OK to return to my regular diet.
Hope this helps. I would be glad to know anything that you or others do about these stupid side effects. Geez! What we have to do.....SUE
PS: seven years! That's what I'm talkin' about! Keep on dancing Rennee
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BabyRuth...my guess is your body is just saying been there...done that & I didn't like it! Even when it's been a few years, I do think it affects us differently & I know, for me, the mental part of the mets dx was probably more exhausting. So much gusto went into the first 2 dx, then it was like wth???? Hope energy finds you again...but do get the rest you need...tax is a bugger but it blasts bad cells! Btw... Reading your history looks like I'm reading my own!
Karen...you look Lovely!!!
Ahhh Renee...I have the same wonky feet. The nurse at infusion said people say the foot neuropathy feels a bit like you're always walking on carpet...that's what I feel. The tips of my fingers are mildly numb, but I think xeloda is probably your biggest culprit on that. My onc says Navelbine probably gave me the neuro, but u blame perjeta. I feel it worst for a couple weeks after tx, then it improves a tad then..whammo...next tx! No stomach issues here, but I pretty much do SUE's diet most of the time. Sorry that it's been tough. I'm going to see if dropping perjeta has any affect on neuropathy and my fatigue...I'll let ya know.
2nd time...I'm a 3 timer too...dang. Taxotere is a good blaster!!! Hope you continue feeling strong. Glad to have you beside us in this journey.
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Ronnie and Sue are the experts and I am new at this so they know their stuff ladies. I do take ranitidine (zantac) starting on day 3 post chemo and it does keep down any belly discomfort. I have not had any stomach problems nor any sort of reflux since starting this. I only take it for about 4 days and then I seem ok until my next treatment. Hope this lil bit of info helps someone.
Rash finally gone on my hands. Had a bad weekend but totally fine by Monday- go figure. I had round three today and feel great right now. Thank you ladies for being here through this especaiily because I know you are all going through your own life experiences. So selfless of all of you .
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Hi Everyone, I'm typing on my bitty phone so be patient with me. I have my second treatment of TH&P tomorrow. The side effects I have are the day after I feel like I'm getting a huge head cold, nose drips, low grade headache for a week, I felt really depressed for a week which is not like me, my mouth hurt for a few days, and although I'm usually a good sleeper, I'm waking up a few times during the night. I'm also having so mild hot flashes from Gesseralin. I also eat a pretty bland diet too oatmeal and salads. Not much appetite for a couple days. I haven't had any stomach or bowel problems. I do take a probiotic. After day 14 I felt really good. Hope this helps. Have a great night. Happy thoughts of cancer going to sleep...zzzzzz.
Dana
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Renegeswan
I've taken all the stomach medicines over the years, and needed something new when on taxotere. What I'm taking is called Dexilant. It maybe something you could ask your Dr. About.
Good luck, Brenda
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Thanks for the words of advice RonnieKay. I have a hard time just relaxing and taking it easy so I think that is contributing to my fatigue. I may need to take more time off work. RonnieKay-our history is eerily similar.
I have not really had any major stomach issues so far. I am hoping to stay on that path. Like you txmom, I have little appetite and eat pretty bland. I tend to make a lot of smoothies which seems to help with my dry mouth.
Hope everyone is having a good day!
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BabyRuth:
While I was on Taxotere my tastebuds went into the gutter also. Nothing tasted good to me; everything was blah. It took all the fun out of eating. I'm sure you're looking forward to that time when regular chemo is over, and you can just go on maintenance with H & P and get your tastebuds back. Have an enjoyable day--Ann
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Funny thing my first round all sweet stuff tasted horrible. My second round all salty stuff tasted horrible. Waiting to see what this round does. (only 24 hours post round).
Baby, I do not recall if you have asked for any sort of sleeping aid. I have trazedome that I only take when I have trouble. Usually the night before chemo and they 2 days while I am on decadron. I have taken it like on day 6 post chemo when I am fatigued but keep waking up and it does help my energy level the next day. I do not use them all the time and now that I am getting treatment I am not waking up as much in the middle of the night with anxious thoughts.
I use maybe 5 a month and it is enough to help me sleep and get through those nights.
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Oh my! This thread is a-movin'!
Welcome and good luck to you 2ndtime4me. If we can help you just let us know.
Freygea and BabyRuth and Txmom – My thoughts are with you as you navigate the Taxotere SEs. I remember that my friend sent me a bag of chocolates during my 2nd round of Taxotere. They tasted like sawdust (and I'm a chocoholic, so that was devastating). But somewhere around Round 5 I tried them again and suddenly they tasted great! Such a strange thing. I'm not sure if I mentioned it before, but lemon flavored anything was my favorite. Towards the end of my 6 rounds I was chewing lemon-flavored gum pretty much all day to keep the weird taste out of my mouth. Like Ann said, it gets better once you drop the Taxotere and food tastes like food again.
I guess I'm lucky to have missed most of the problems with neuropathy. I sometimes wonder if it is because I've always had poor circulation in my hands and feet. I do have weird things that started on the Taxotere and still happen occasionally. Like my left nostril goes numb for a few minutes here and there. And my right foot "rings". It vibrates just like a cell phone. I told the nurse that the other day and I think she put it in my chart. I hope she worded it differently!
Thanks for the compliments on my avatar. I thought I should look like I do now rather than my pre-diagnosis photo. I like yours too Karen!
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Egg custard snowballs are the best things ever!!!!!!!!!!!!!!!!!!!!!!!!!!
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thanks everyone for advice on the neuropathy and the stomach issues. It's amazing how much each of us goes through with all the treatments we have. It helps so much to have support. Have a nice day everyone.
Renee
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