Please post your two cents on Herceptin "side effects" real or perceived! - Page 13

Adriana Mangus · 07-26-2007, 07:46 PM

Dear Marily:
Do you still remain NED after almost 7 years on heceptin?. I'm on my 4th year and doing ok for now. A little worry about mets to other organ, already have mets to rt lung. Just wondering I found this post of your dated 2005? Best regards.

michka · 07-28-2007, 12:56 AM

Lani
Had Taxol with Herceptine for 12 weeks then Herceptine every 3 weeks until it makes a year. (still ongoing).
It is difficult to know what came from Taxol (very toxic) and Herceptine.
I had a runny nose for the first 4 or 5 rounds then it stopped. the worst was the muscle and joint pain. Really difficult to support.
Today, I still have the severe pains all over. I must say it worsened when, on top, I started the hormonal therapy.
I need to drink because my mouth is dry. This started with the Herceptine/Taxol where I drank 4,5l liters a day. Now it is down to 2,5 liters a day. My toe nails fell off (this is Taxol) but today my nails are very fragile. My hair grows slowly.
What comes from what?
Michka

tdonnelly · 07-28-2007, 07:03 AM

I am receiving Taxol and Herceptin. My first cycle I had severe bone pain and burning with each bowel movement; I then started rectal bleeding. My second cycle; severe bone and joint pain. My vision tends to be blurry; just after receiving treatment; headaches lasting several days. Water retention. Chest pressure and shortness of breath when walking.

I am told I will need Herceptin for one year. What lasting effects will I have to endure?
When I tell my Doctor/nurse side effects they tell me they never heard of this. I do not like being dismissed in this way. The medical profession is doing a great disservice to all Breast Cancer patients with that attitude...Sharing of information is so important for all of us and future generations...

11/28/06 Infilitrating Ductal Carcinoma Stage II HER2 Positive
Lumpectomy/Portacath surgery.
4 cycles of A/C
To date: 2 cycles of Taxol/Herceptin/2 more to go; then Radiation.
06/2007 Nodules noted in left breast: Hoping chemo will shrink them. ?

I would like to hear from others regarding Herceptin.

Heide · 07-28-2007, 11:08 AM

Hello everyone. I had Herceptin infusions for 12 months, 3 months w/Taxol and then 9 months by itself. I started Herceptin Oct. 2005 weekly and stayed on it weekly until I finished radiation in March 2006. Then my Onc changed me to every 3 weeks Herceptin until I finished it in Oct. 2006. I don't recall any side effects of the Herceptin except the runny nose; and that I didn't even realize could have been related to the Herceptin until I read some of the other posts on here. I found Herceptin extremely tolerable to my system.

I enjoy reading all your posts. Thank You.

Nancy B. · 07-30-2007, 07:03 AM

Dear tdonnelly,

I suspect your bone pain is coming from the Neupogen you're likely getting while on Taxol to stimulate your white blood cells, which are destroyed by the Taxol. These cells are made within your bone marrow, and the pain comes from the stimulation of these cells. You shouldn't have this when on your Herceptin alone. I'd also like to suggest that your rectal bleeding may result from the severe constipation that Taxol can cause. Try taking stool softeners every day and drinks lots of water. I had your side effects while on Taxol and Herceptin, but on herceptin alone I've only had stiffness in my hands and feet after waking in the morning. Good luck and hang in there!

tdonnelly · 07-30-2007, 08:51 AM

Hi Nancy,
Thank you for your kind words and support. There are days when I wish this were all behind me. I only have two more cycles of Taxol and Herceptin. Then Herceptin only and still need to have Radiation. What tumor markers are used to see if the cancer is still growing? How do we know if Herceptin is working? At a recent mammogram, nodules were noticed in my left breast; the uncertainty of this disease can be overwhelming at times. What bothers me the most is I had only known one woman in the 70's with breast cancer. Now its become a national epidemic...No one seems to know for sure how this has started. I often think of what all of us have in common-to bring on this disease???

Nancy B. · 07-30-2007, 11:56 AM

T,
I believe the most accurate test to determine whether treatment is working is a PET/CT scan. I had one at the time of initial diagnosis and then another at the end of chemo and before radiation. Thankfully, for me the chemo destroyed the 2 small infra-clavicular tumors I still had following surgery (I was Stage IIIC), and I am NED since then (June 2006). The tumor markers are called CA 27/29, although these are not completely reliable. Herceptin is a great drug - see Andi's (Andrea) amazing story in earlier posts. Yes, the uncertainty we all face can be overwhelming, but you just need to put one foot in front of the other, one step at a time, and move through your treatments - there is light at the end of the tunnel! Do lots of research so you can understand your options. I will be happy to try to help if I can - I work in the pharmaceutical industry and sometimes I actually hear of new things before my doctor.

sdhaem · 08-01-2007, 03:50 PM

I suffered from L and R ventricle damage, and my onoc took me off herceptin, with no promise to ever go back on it.. I am very anxious about not receiving the full 52 weeks I only did 18 weekly treatment.. The Cardiologist put me on heart med and I get a Muga scan next month.

futurefocus · 08-14-2007, 11:42 PM

Hi all...finished my herceptin May 30, 07 had VAP removed June 5,07. AS reported earlier I was one who had very bad side effects. I considered stopping treatment at 6 months ...but finsihed the entire 12 months. i am still suffering I take neurotin and darvaset four times a day. I couldn't get through the day without these pain/nerve meds. I sure hope that the effects will subside...I can't imagine living this way...or could I? Sure beats not living I suppose. Is there anyone out there who had serious side effects and after some period of time they went away? Could use a little hope....every ache and pain makes me fear the worse....
Thanks for the feedback...

tdonnelly · 08-19-2007, 04:37 PM

I have received 2 cycles of Taxol/Herceptin. For several weeks I have been experiencing all over chills/goosebumps and then a wave of tingling and numbness all over. It lasts several minutes. It's almost like tiny electrical shocks ? Mostly when I lay down. One night it was so strong it woke me from a sound sleep. These episodes continue 5-6 times while I'm trying to go to sleep. Sometimes when sitting up this same thing happens to my legs-numb/tingling sensation. Is this a form of neuropathy? Possible nerve damage? Any info. would be appreciated.
Tamara

Lumpectomy 11/06 Stage 2 HER2+
Invasive Ductal Carcinoma
Nodes/Margins Clear
Port Surgery 3/07
4 cycles A/C-fin 06/06
2 cycles of Taxol/Herceptin
Radiation to follow

Adriana Mangus · 08-24-2007, 08:47 PM

Hi Myra: Beautiful Costa del Sol!! I was there October'06. I did not find your post until now, I would have visited you..:-)

Whos' the author of the book you mentioned? Love Peace and Self curation..

I work with a girl from Madrid, her name is Marimar. Es muy linda!!

Have you ever visited us?? How are you doing with treatment, side effects, etc. I'd like to hear from you...Thanks.

gin-tx · 08-24-2007, 10:44 PM

Dear Adriana,

Received your request for info. I have some side effects but not some of the ones others describe. I have constant runny nose, some muscle aches, not a lot of energy at times (I still work part time) and some days feel general lousy after a treatment. That's why I do them on Fri so I can have week-end to regain my strength and the heat here is not helping. Have to get out early in day to run errands or can't stand to be outside. Hope this finds you doing well, keep me informed of your progress.

ginkott1@aol.com

Joan S. · 09-15-2007, 07:32 AM

I am on Herceptin and Taxol so I am not sure what is causing what but it was very interesting to hear about the nosebleeds. That is definitely one side affect that I am having. I was off for two weeks and it definitely got better. Also feel like my sweat has a definite smell like the stuff is oozing out of my pores. Never had that before. But it all seems to be the job. My last pet scan showed a "marked improvement". They are going to check on my liver and kidney function though because there seems to some concern about that. Can anyone tell me if they have had this side effect?

harrie · 09-15-2007, 11:26 AM

Joan, yes I had the slight nosebleeds. The lining of your nose gets impacted from the chemo. After some experimentation, I found what worked best was a moisturizing nasal spray over the counter, and like a neosporin ointment rubbed inside my nose with a q-tip at night.
Maryanne

gin-tx · 09-16-2007, 10:09 AM

Dear Joan,

I have had slight nosebleeds but nothing heavy. I am only on Herceptin with Aredia so I'm sure my side effects are different. I have a lot of bone and joint pain, especially in hips. Don't know if it's from Herceptin or arthritis. I will mention it to my dr this week and see what he suggests. I had a hip xray a few weeks ago but nothing showed up. Hope you continue to improve and keep me informed of your status.

ginkott1@aol.com

myraazzopardi · 09-18-2007, 10:51 AM

Hello Adriana. I amso sorry have only just read your mail. Thank you so much so great to see how well you are doing. Please contact me whenever you wish on info@costaadvicebureau.com I live on the beach and though swam with a dolphin a month ago have not been swimming since as has some discharge from my breast a little swollen which seems to have gone down now. I have not had a pet or any scan since before the tumeroctomy in fact dont even know what they are. Please let me know if you visit our area again. Hasta pronto. Myra.

myraazzopardi · 09-18-2007, 11:00 AM

Sorry Myra again. Author of Peace love and self curation. American author Bernie S. Siegel. He gives talks around the united states. Wish that I would give myself the time to follow the tips that he has learnt from his patients who have cured themselves. ( With all the assistance and medication needed from the medical profession).

myraazzopardi · 09-18-2007, 11:15 AM

Hello all.
I have been on herceptin now for five months. the only side effects that I am aware of is tiredness that just comes over me late afternoon. I am working and helping look after four active grandchildren at the moment. May explain it. I am only on herceptin after chemo and rads.

Andrea Barnett Budin · 09-18-2007, 12:00 PM

Joan and all, When I was on Taxotere (a cousin of Taxol) I had a severe nosebleed from the moment I woke up every single day. It took half an hr and half a box of tissues to get all the bld out. Then I was good, except used Vaseline throughout the day and Ayr nasal something at night (a salve). Nosebleeds stopped when I stopped Taxotere. Been on Vit H since '98. Extreme fatigue, aided by my nut/onc -- nutritional oncologist guru/healer -- and his list of supplements for ENERGY, boosting immune sys etc. List in 6/30 thread TO "SUPPLEMENT" OR WAIT, for those interested. Happy to answer any questions you may have. I am always here for you. All of you. And I rest serenely knowing YOU are all always there for me. Love y'all...
Andi

dbronson1 · 09-18-2007, 02:53 PM

I am currently receiving Herceptin weekly (for 52 weeks total). I am on my 27th week , as of this Thursday. At about my 24th week, I started getting a severe reaction. Prior to that, I had a mild itchy rash every week that was cleared up by Benadryl. Since then, I developed a severe rash, with hives. I was put on a regimen of Decadron, 5 of them on day one, 4 on day 2, and so on until I reached zero. As soon as I reached zero, I then went into severe chills, cold sweats, diarrhea, vomiting, you name it. It was terrible. That lasted for 3 days. Then, I had an appointment with my oncologist who said I should be on 2 Decadron (4mg each) the night prior to my Herceptin and also the day after. He started me on that last Thursday. Well, as soon as this past weekend arrived, I am back to a rash all over my back, arms, etc. Still getting the chills, sweats occasionally. I am due back to the oncologist after my Herceptin treatment on Thursday. He has mentioned stretching my treatments out to every 3 weeks because of my allergy, but he wanted to wait and see if the Decadron did the trick. While I want my treatment with Herceptin to continue, I also do not want to go around feeling this way. Has anyone else had a problem like this with Herceptin? If so, what did you or your doctor do?
Thanks for any info. you can give me!!