Re: kadcyla side effects
 

Hi Cat.. i must be blessed that despite the chill, muscle pain i was able to sleep for that long :). I stayed in the hot shower for at least 15 mins because the chills were so bad although my body felt warm. Let's hope Kadcyla will do the magic for us !!! Phil has a good list of supplements/food while on Kadcyla. I am going to follow his suggestions to boost my palates up.

Re: kadcyla side effects
 

It seems like s/e are different for many of us. I have had 3 doses of Kadcyla, and have headache and fluish symptoms on and of the first week. I feel fatigued the first 2 weeks, well the 3rd. All in all better than chemo as well as Tykerb and trial or targeted therapies I have been on, but harder than I thought it would be. I also have the chemoey taste, and a loss of appetite. I had lost about 8 lbs., but gained it back since I am on steroids for brain mets. Stopping the Kadcyla until June 25 while we treat the brain mets.

Re: kadcyla side effects
 

Sorry to hear about the brain mets Ann. How are you having them treated? Do you have to stop chemo whilst having them treated?

I have had two cycles now and in the second cycle, I have a dry mouth. Dry mouth sounds pretty lame to be complaining about, but it is really awful! I need to google if there is anything I can do about it. I tried to eat some cashews the other day and nearly choked lol.

My fatigue and headaches weren't as bad this cycle, still there but not as bad, and I also got something different for nausea, and I think that made the world of difference

Stay well
Dawn. Xxx

Re: kadcyla side effects
 

I am going a bit non-conventional as I am not interested at all in WBR. I will have partial brain radiation to my cerebellum and brain stem. The largest and most active mets are in that area, and the spots above the cerebellum are very small. It is pretty scary especially as Kadcyla doesn;t get into the brain, so I will need to find a trial pretty soon. I was told I had a spot on the Neratinib trial that would be there in 6 weeks, but it was given away while I waited the 6 weeks for my follow up MRI. Very disappointing. I will just trust that I will be able to get on a trial that works for both my body and brain!

Re: kadcyla side effects
 

Oh that is disappointing! Do you have your onc on the lookout for you? Partial brain radiation sounds like it makes sense to me, if you don't need it everywhere, why put your brain through that? Best of luck finding what is right for you
Dawn. Xx

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Hi Ann
Just replied on you other thread too! Did Tykerb stop working for you?
Denise

Re: kadcyla side effects
 

Lorraine gets the dry mouth. biotine helps.

Re: kadcyla side effects
 

Tykerb quit working for me quite some time ago have had it in various combos over the years, and usually get 3-5 months out of it. On to the next BBB busting targeted drug (I hope!). Kadcyla does not cross, so I doubt my dance with Kadcyla will be long enough to meet NED on the dance floor. Oh well. Just happy to be enjoying another summer with my loved ones!

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Re: kadcyla side effects
 

Do you know if those drugs are effective for us HER2 ladies? Trials have focused on triple neg or basel cell bc.....

Thanks for your warm and encouraging words!

Ann

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Annmask, I am sorry to hear of your struggle but am sending lots of prayers that something comes along for you to handle both body and brain at once. It seems there is always something coming up and I hope a great one becomes available for you.
Your comment about another summer reminded me of this:
Our kids are adopted and when we had our son from South Korea, they had closed Korean adoptions so we moved our paperwork to the Phillipines. It all takes a lot of time and I kept saying one more summer with enjoying and bonding with my son before attention is divided. Well that summer turned into 2 and got close to 3 when we decided to see if Korea was open to special needs. When I called, my social worker said she had just received a letter saying there were 2 spots available for healthy babies for IL families and we qualified. I could still be enjoying summers but a miracle happened and you just don't know what's waiting around the corner.
Good luck with everything. Let us know how you do with the radiation.

Re: kadcyla side effects
 

I had my second dose of Kadcyla last Thursday. My side effects are fairly severe and persistent. I haven't really had this much discomfort since Taxol.

I will have to start watching for patterns, and seeing if there's anything I can do to head of any of this stuff. It could be that the severity this time was enhanced by jet lag and lack of sleep. I had just gotten back from a trip to Ireland that morning, and I kind of took the long way home.

Here's a list of side effects that I've experienced: dry mouth, brittle finger nails, hot flashes, nausea, diarrhea, headache, and neuropathy. When I had neuropathy while taking Taxol I started taking glutamine. I bought some more yesterday. Too soon to tell if it's helping. I wake up with headaches, except the last two nights I took Ibuprofen at bedtime and I didn't get them. I dug out the Comapzine and Ativan, and they are good for dizziness/nausea.

The last four days I have felt sick about 1/3 of the time. I'd say the nausea and sweating/hot flashes are the least pleasant effects. Diarrhea is very occasional, and not nearly as big a problem as when I was on Tykerb.

Re: kadcyla side effects
 

Day 6 since 1st Kadcyla. I have been sleeping a lot the last couple of days, average 10 hours a day. Side effects include loss of appetite,manageble nausea, tiredness. Not sure if i should take medical leave at this point. just had a whole body PET and brain CT today. Hopefully everything is good and the cancer is still confined to the skin.

Re: kadcyla side effects
 

Cat, I too have an adopted child- age 16 now from China. She was 11 months old when I adopted her, and 2 when I had the DCIS and mastectomy. I had my second miracle with the biological birth of my daughter now 11. The shock of stage 4 after being "cured" of pre-cancer came when they were 11 and 6. Life has many surprises, both magically fulfilling, and devastating. It is all about acceptance for me, and loving each moment I have with my beautiful daughters on the green earth!

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Annmask--I no longer think DCIS is necessarily "precancer." We just lost our dear Chrisy, who was also diagnosed and treated at stage 0 but progressed to stage 4.

After my whining yesterday I feel fine today. The hot flashes persist, but they're really not too awful. (I just thought I was done with all of that!)

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I've been getting headaches, fatigue, & nausea. There's no rhyme or reason when I have these side effects. They're sporadic and happen anywhere from Day 1 - 21. Today was the first time I actually vomited. We were in the car heading home from Mass. Thank God I had one of the blue plastic barf bags from the hospital. I just ordered more on from Amazon. It's so easy to keep one in your purse.

God Bless.

- Penny

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Penny, I am relieved to hear you say symptoms come and go at any given time because mine have been doing that and I've been wondering if it's my imagination or talking myself into it. I am sorry you threw up thO and hope you are doing better I have ondesttron (spelling?) zofran I think. It works really well and I take it the first sign of nausea. Melt in mouth and individually wrapped so easy to carry with. Causes possible constipation but I haven't needed it regularly so even tho I'm prone to constipation, I haven't had a problem. The fatigue is hitting me but I've been able to do more because I really have been feeling better in general. The fatigue mainly hits late afternoon and evening. I wake up w headache in morning and it goes away as I start moving. I'm still wondering if it's my neck which I suppose could be the joint/ muscle pain??? All that I do know is I have never in my life been so focused on every twinge and bowel movement in my life as I have since all this started!!!! I try not to focus but it's hard to stop! Bad habit. I had my first follow up CT thur so this is a very long weekend and I have head and neck MRI mon. We haven't done markers recently so I have no idea where they are at. I'm hoping even though symptoms are irratic you at least are feeling good otherwise. Positive thinking.,,,.
Take care,
Cathy

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Ann,
I'm sorry I didn't reply to your question sooner...I just saw it today.
The 3 drugs the doc mentioned at the LBBC conference aren't specific to one kind of BC, so they should work for us HER2 gals. The problem is...when will they be available?
Denise

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Cat - Are your headaches localized? Mine start in the forehead and travel down my sinuses. I'm going to ask about zofran. I have compazine pills that take a while to kick in so I end up taking them with xanax, which only contributes to the fatigue. Feeling better today, thanks.

Denise - I was on a clinical trial that involved veliparib. Don't know if I got it or the placebo, though. I thought parp inhibitors were only for BRCA1/2 cancers?

- Penny

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Penny,
You may be right...I'm certainly no expert...but that wasn't the impression I got. Anyone out there know the answer?
Denise