Please post your two cents on Herceptin "side effects" real or perceived! - Page 11

DianaW · 01-24-2008, 04:15 PM

Thank you Elaine.... I agree!! God bless, Diana
p.s. it's very,very cold here in Boston so I will dream of being in Hawaii

ElaineM · 01-29-2008, 03:55 PM

Hi,
I am wondering if rashes and sinus problems are side effects of Herceptin or Navelbine. I can live with rashes or sinus issues if I know the medicine is working well. I am just curious.
ElaineM

dbronson1 · 01-29-2008, 04:06 PM

I have had a rash since week 22 on Herceptin. I also have a runny nose all the time. I have had other sometimes serious side effects from Herceptin also. I only have 10 weeks to go, and I can't wait to be off it. For the past two weeks straight, even the Decadron does NOT take away the itchy, hivey rash. I am up most nights (and some days) with cold chills, sweats, and diarrhea. I am not on anything else, except the Decadron, so I know it is the Herceptin. All my doctors say oh Herceptin is a piece of cake. I have felt worse on Herceptin than on any of my chemo!!! My onc. says I am one of a very few he has ever seen with these Herceptin problems. I have stayed on it despite all these problems, because all of these side effects are worth it if my cancer never comes back!! It has never affected my heart, my MUGA scans have been great so far. So as long as I can keep a normal weight, my onc. lets me stay on it.

ElaineM · 01-30-2008, 03:12 PM

Hi,
Thank you very much for sharing the information about rashes and sinus issues. I appreciate it very much. I want to continue Herceptin too, because the benefits outweigh the side effects. Hang in there !!
ElaineM

ElaineM · 01-30-2008, 03:15 PM

Hi,
I wish the drug company that makes Herceptin would inform the docs. That may never happen, so I guess it is up to us to do it.
Peace,
ElaineM

kat in the delta · 02-07-2008, 01:38 AM

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 · 02-07-2008, 07:53 AM

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 · 03-17-2008, 07:23 PM

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 · 02-08-2008, 07:33 AM

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 · 02-09-2008, 01:33 AM

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 · 03-18-2008, 12:16 AM

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 ...

Kathy S in Tokyo · 01-29-2008, 04:12 PM

My opinion is that the sinus troubles are from the Herceptin. I started weekly Herceptin last March and had sinus troubles, then added Taxol to the regimen (3 weeks on, 1 week Herceptin only) in June. On came the muscle pains in toes, feet and sometimes legs, mostly when I lay down to sleep. The runny nose got a little worse because of the loss of the hair in my nose from the Taxol LOL. I'd only had a sinus infection ONCE in my life, about ten years ago, before cancer and subsequent treatment.

Hugs,

tdonnelly · 03-22-2008, 05:19 PM

After my 13th treatment of Herceptin (every 3 weeks) I became very nauseated; this has lasted now for 4 weeks. I feel the constant urge to vomit. I have had no appetite; I force myself to eat 3 meals a day. My recent blood test shows complications with my liver. I decided to forgo my remaining 6 treatments. I fear my body is rejecting the Herceptin; all previous were tolerated. My thyroid disease with liver complications is a real concern. I am just praying my body finds its own way back to normal. No tests, no treatments etc. just lots of rest.
Tamara Donnelly
Invasive Ductal Carcinoma 10/2006 HER2+

ElaineM · 03-23-2008, 03:22 PM

Hi T Donnelly and anyone else who is reading this.
I am so sorry you have been feeling so under the weather from your Herceptin treatment. Oncologists and/or chemo nurses might be able to suggest medicine for that. There might be a dietician, nutritionist or natropathic physician in your area who can help you plan a menu that will not make you sick if you decide to try some more Herceptin in the future. Maybe your doc can refer you to somebody for that kind of help. There is a list of Herceptin side effects at http://www.herceptin.com. There might be some information about your side effects there. Everyone's body is different, so not everyone will experience the same side effects from medicines. Hang in there.

DianaW · 01-29-2008, 04:16 PM

I agree, minor issues I can deal with happily if it is working. I have been off the navelbine since August and my sinus and eye problems haven't gone away, nor has my fatigue. I did not have a rash. My doctors looked for other reasons for my fatigue and I know I've mentioned my sinus problems in passing but was never told it could be from the drugs. They thought my fatigue could be from depression so my celexa was increased... which didn't make a difference in the way I felt (cuz I'm not depressed) so they decreased it again. I'm just happy that what I am feeling is real..... and I can't wait for my next doctors appointment to tell him

D
Where in Hawaii are you? I went on my honeymoon... it will be 20 years in May...

DianaW · 01-29-2008, 04:23 PM

I agree.... I forgot to mention that I spoke to one of the infusion nurses at the hospital today and she did confirm that she has other patients on herceptin only and she's heard of eyesight deterioration, sinus and drippy noses, and fatigue....
I just wish they would have mentioned that these are possible side effects.. they only talk about the heart...other patients must be mentioning these things to their doctors... this is a major Boston hospital I might add....

debski · 01-31-2008, 11:26 AM

Funny that because initially I thought that I had no side effects from the herceptin. But now I have only 5 treatments left I feel quite unwell. Joint pains, aching limbs very tired, blocked up nose etc. My chemo nurse said that they were hearing reports of extreme fatigue- made me feel better actually. I have felt unable to work for four weeks now.

ElaineM · 01-31-2008, 03:39 PM

Hi, debski

I hope you feel better soon. Fatique can be a side effect of Heceptin. If you want to go to Medline Plus and search for Herceptin or the Herceptin website at http://www.herceptin.com you will find a list of the side effects. Hang in there. Knowledge is power.
Peace,
ElaineM

debski · 02-01-2008, 01:49 PM

Thankyou-I will look up that link. The only trouble is that Doctors have a strange way of brushing aside any suggestions that it might make you feel ill.

I am absolutely sure in my mind that I feel like this because of herceptin. I am sure it is a price worth paying.

ElaineM · 02-02-2008, 04:01 PM

Hi Debski and everyone else.
I apsolutely agree about doctors not wanting to admit Herceptin has side effects.
Yes. Having a rash is nothing compared to having more cancer and Herceptin is a mirable drug, but doctors should admit it may have side effects. We can live with the side effects if we know the drug is working well. It would also be nice to know what is causing our discomfort though.
Peace,
ElaineM