Please post your two cents on Herceptin "side effects" real or perceived!

[kat in the delta]

I feel like I am getting confused with the Kathy that has 4 children who are young.. I have 3 sons in their 20's. My husband looks at me with total disgust.. He will not help me do a thing.. I will never be the same
up and running to do all for all...... as I used to be. I can barely do 1 thing at a time after a masc.. rad.. A/C.. taxol... and Herceptin..then a yr of the Herceptin. mixed in with some zometa..
I really feel like my husband is MAD because I DID NOT DIE !!! still have Pain.. brown patches up both legs.. and sores,too ...
Went to a party without him... and wondered .. did the few men..I dances with.. know i did not have a breast........... I miss not having a breast.. I am sad.. help !!!! kat in the delta

[miss di]

Hello to everyone,

This is my first post, 2nd round with the cancer beast. Was NED 5 years and then wham, stage IV.
Started Herceptin every 3 weeks in Aug 07. Had whole body rash with extreme chills firt treatment. Take benadryl with infusion now. Aslo had nose issues since day one and extreme diarrhea for 1 week and foot cramps. Next few treatments went fairly well, chills, achiness diarrhea again and foot cramps for about a week or so.
By November though, the side effects all stayed the same, but add cold tingling hands an knees, blurring vision and bone aches, all lasted longer 8-10 days. Weight loss.
Dec. felt rotten as all the same above, add headaches first three days after, constant diarrhea and more pain and foggy head. Same in January, all symptoms but now all side effects lasting full two weeks.
Had PET scan and Muga in Jan. Many Many spots have shrunk, and only one spot seen in liver (had 3), nodes in clavilcle and neck can not been seen at this time. Muga good. Tumor markers all normal!!!
So, Herceptin continues to be my best friend, I'm just going to take a break. Onc is giving me Feb off, then starting weekly in March to see if I can handle lower dose better. She did state that these are not normal side effects of Herceptin but anyone can have side effects from anything. I truly believe it is from the Herceptin, I gave her this website to read because of so many saying the same thing. Now I don't feel like a nut.
My best to all,
Diane

May an angel walk beside you.

[runtolive]

talk to your oncologist about a clinical trial of trastuzumab-dm1.. its herceptin plus a toxin attached to the herceptin. about 6 gals here on the forum use it currently with good results..

run to live

[gin-tx]

Dear Kathy,

Am sorry you are having such problems with Herceptin. I have been on for 1 1/2 yrs, don't know how much longer I have for treatment, have not other drugs you were given so far. I had a very aggressive cancer and this is keeping it from coming back but cannot do this forever. I do have more down days after treatment and I think it's because of the length of time. I'm usually pretty wiped out the 2 days after, I just stay in and rest. Can't force myself to do for anyone. I hope you get better, the brown patches on your legs, don't know what that's about, have you seen a dermatologist? Keep in touch and let me know of your progress. And yes I have a lot of aching in back, neck, figure it's the treatment.

ginkott1@aol.com

[Kathy S in Tokyo]

Hi Kat, I'm the other Kathy (in Tokyo with 4 kids) but I think we might have the same husband or maybe "soul twins". Some guys are just clueless! I'm sorry that you're having such a hard time. Are you still on the Zometa? The list of side effects for that drug is fairly daunting and after dealing with diagnosis and all the other cancer treatments and also the Zometa it is no wonder you're not feeling so hot.

I'm glad that you managed to get out to a party and dance and hope that next time you won't worry so much about whether your dance partners knew that you were missing a breast. I hope that most guys out having fun are not really so worried about the package the fun comes in but the company itself and that you will eventually be able to relax about body image. Dancing ought to be good for your circulation at any rate.

Hopefully a dermatologist can help out with the brown skin patches and sores.

Big hugs,

[kat in the delta]

Well I haven't been out lately... and I think I stayed in the house for 9 days straight..no sunshine.... after going out that nite..dancing... But it WAS worth the effort and I did have FUN !! Kathy, Do you know any Chinese or Japanese Medicines or alternatives that some people use ??

The bottom of My legs and my ankles have gotten much worse..
They itch and i just hafta scratch 'em at times.....
and I have sores...even more..and in Pain also...!!

. I did read something about these " targeted human growth chemos."..or something close to that... YOU all ...Please HELP ME OUT>>> they were called EFGH's or at least.. Had " 4 " iniatials."..and that these chemos...sometimes turned your cells vs .your SKIN !!! and more....

Anyone know of this??????.

ANYBODY know if HERCEPTIN >>IS classified as one of these?????
I had a bone scan run... abofut 4-6 wks ago by my reg. MD... and he told me to go back for 2 more X-rays... as they may have seen ??2 places( could be arthritis or c.) on my chest and back of my neck.... But I just haven't made it that far yet...!!!
and I lost the only broken at the top key to my youngest son's car--I CANNOT FIND IT ANYWHERE>>BUT STILL LOOKING.. gotta call a dealer with the VIN #..asap. It had been a thrill to have a car-- fairly new + It has a
a CD player ..etc.which I've never had.( being the marytr mom and all).
My Youngest son has my HUSBAND'S " NEW " Truck & he is working with some Amish on a 100 yr old house my husband bought in "Iowa
" near HUNTING LAND, my dear husband bought!!!!

---------------I have been living in LA LA LAND or something!! now
wwwwwwwwoooooooooOOMMMMMPPPPPPPPP !!! what a HIT !!


--( there went the $$$)--my husband is driving his deceased mother's old car ---which is suppose to be Mine. But HE NOW holds the 2..maybe 3 sets of keys..for the moment as he darts a smirk at me digging thru the rubble
looking for that son's 1 Broken key..knowing I have to go to the dentist and do tests..etc....
..... Well, I also thought his parents old house we are now in,
was OURS!!!-- evidently not....
Looks like I gave up my 4-bedr. home for a 2 bedr one.... and got nothing.. for sure!!!! i think that MY NAME must NOT be on this one.
... need to check at the court house..

Herceptin may have gotten the C. for now..., but IT ALSO DID A NUMBER ON MY HEART..as it is not UP to PAR.. LVEF is below 50. My Onc didn't think it was necessary to test my heart.. at the last 6 mos of Herceptin and the Final End one.... ...
...Yes I have finished chemo...

BUT, I feel like I am coming out of a WAR


What WAR??

The WAR of CHEMO.... vs....... CANCER....!!

------and I am hurt--wounded.... in and out.....and do not know where to turn.
.
But for now.. I'm gonna try to sleep on a worn out sofa..with a dog..., not taking a bath/shower either..====... that is just too hard...!!!!

TOMORROW?===.
I have a dentist apt. in the AM...and my husband TOOK the other set of CAR keys from me.............
It's a HARD Enough Trial.to get across town or anywhere these days....and it looks like HE is trying to make matters worse by keeping all keys..and wil Block me from going to the Dentist ...