Please post your two cents on Herceptin "side effects" real or perceived! - Page 19

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,

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....

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

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

Jackie07 · 02-03-2008, 07:53 PM

I guess the heart problem is the biggest side effect.

jaybt · 02-03-2008, 09:00 PM

I am Stage 3 Early breast cancer (locally advanced), ER positive, and postmenopausal. I commenced Herceptin with Taxol and will continue to take Herceptin every three weeks for approx 1 year until July this year. I also started taking Arimidex in December 07.

My two cents is that I believe there is a problem with identifying any particular side effect when a number of drugs are being taken concurrently. Its also well established that chemo does damage to our systems.

My adjunctive therapy was dense dose AC and Taxol/in conjunction with 3 weekly Herceptin. However on the second Taxol treatment/first Herceptin my body became toxic and I moved to weekly Taxol and continued with 3 week Herceptin.

The main symptom of being toxic was breathlessness. No previous asthma history and had given up smoking six months earlier. I was allowed back on Herceptin when it was confirmed after tests that no problem existed with my lungs. On the week that I now have Herceptin there is a tightness in my chest and I feel like I am not getting enough air. My heart races a little at times.

On the week I have Herceptin I have a crusty nose and feel fatigued. I feel "a bit quiet" but nothing bothersome. My heart function results are good over the three eco-cardiograms (MUGA's?) that I have had since taking Herceptin.

My body continues to ache quite badly after chemo (finished back in October 07), particularly the legs, ankles - and I numbness in my hands. I also continue to bloat, sweat and sleep badly some nights. However, I believe this is not caused by Herceptin but not helped with Arimidex as they worsened when I started taking this Arimidex. I will put mood swings, nail cracking and swelling of hands and feet to Arimidex, with fuzzy memory and loss of words to chemo.

My tumour markers have dropped considerably and I attribute this to good treatment which includes taking Herceptin. Obviously something has worked for me. I don't wish to contemplate the alternative if Herceptin was not available (and/or freely provided in this country). Like many of us I am just waiting for the next miracle drug to fix the rest up.

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.

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,

BethC · 03-17-2008, 04:34 PM

I have been taking Herceptin every 3 weeks since October 1, 2007. For the first 18 weeks, I also had Taxotere and Carboplatin. Approximately 14 days after the infusion, I start breaking out with acne and a rash on my face, chest and upper back. I continue with the breakouts for about a week.

mabrooks · 03-17-2008, 04:56 PM

I only have three more Herceptin IV's. I have been lucky enough to not have to have any chemo. My only issues with the Herceptin - is that I have no more eyelashes, my nails and finger tips are a mess - and splitting and cracking and painful - and my nasal pasages are a mess. I will be glad to be done with this drug and I just hope that down the raod they don't inform us that it has harmed us in anyway. I finally weaned off Effexor - that was a nightmare. It helped with hot flashes - but the withdrawal was awful. If you are considering it please google "effexor withdrawal' before you start. MD's are not aware of how terrible it can be to stop it.
Good luck to you all - this is a great site!

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

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 ...

norwegian · 03-18-2008, 01:09 AM

Ah,- I'm so happy about this option to complain a little! It is hard to do it elsewhere, because I feel I should be happy,- and Herceptin is not chemo..and I am happy about that, but....you know..

Anyway, here I go:

Joints pain. Sometimes I feel ( and look like!) as I'm 80 years old when I'm rising from my sofa or a chair. Specially if I've been sitting for some time. I am all stiff in my hips, and my anchles and around the feet. And I walk bend like a really old person before I am able to straighten myself up. Fear:Has the cancer gone to my bone?

Back pain. A strange kind of feeling extremly tired in my back. I went skiing - cross country the other day, and after a short time I had to return because of my tired back - and my short breath.. Often I wake up with this back pain. Fear: Recurrance? Bone cancer

Short breath. Even if I exercise twice a week ( mostly to strengthen my muscles, but also to maintain a better breath. Not heavy exercise!) I don't seem to have any resources! I have checked my heart - and it is fine, but... Fear: Lung cancer? Heart failure?

Nose problems. Soar nose, "crispi" nose, dripping nose, tight nose - hard to breathe.. No special fear (!)

Insomnia.

Hair. My head hair is growing very slowly. On my body - very thin and - well, that is really no problem. I havn't shaved under my arms or on my legs in about one year.

Hot flashes.

Dizzieness. Sometimes only. Fear: Have a guess...

I guess that was it. What a relief to have a little complain about this!!!

4xFEC100 and 4x Taxol. 25 rad.

I will finish my last Herceptin in June. Have had it for one year then, every 3rd week.
The chemo pushed me into menopause.
Have I forgotten something?

Happy Easter to all of you!!