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

[Andrea Barnett Budin]

Yes, Nancy, WE MUST ALL BE PRO-ACTIVE, VIGILANT AND INSISTENT -- ALL WHILE REMAINING MORE THAN SANE, BUT JOYFUL AND SERENE. A neat trick to be sure! I now save copies of every report and test I have and compare one to the last, once home and clear-headed. I micromanage my case, as the best of doc's office make mistakes, misstepping and failing to properly oversee. I am very organized. Always was, but now it's become a Survival skill!

I wish you wellness and I do all my sweet Sisters... ANDI

[tdonnelly]

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.

[Nancy B.]

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]

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.]

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]

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]

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]

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

[Joan S.]

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]

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]

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]

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]

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]

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!!

[futurefocus]

It may be possible you are allergic to the reconstitution solution that comes with the Herceptin. It is a perservative for the drug not for you! You may want to have it reconstituted with sterile H2O. It helped me and I have and had servere problems -neorp muscular, pain etc. Hope this helps.

[tdonnelly]

I have completed 4 cycles of Herceptin to date and the joint/muscle pain is increasingly becoming dibilitating. I took vicodin for two months as Aleve or Advil did not work. I can not stand for more than 10-15 min. and have difficulty walking. Stairs are out of the question. If I sit too long joints become stiff and laying down does not offer much relief. The pain and joint stiffness I am referring to is in my back, pelvic area, back of legs, hands, front and bottom of feet and knees. I am only 47 and walk like I am 80. My bones are already at risk as I have thyroid disease. Since beginning Chemo 8 months ago TSH has not been stable; the last count in August is high. Any suggestions for non-narcotic meds, vitamin or supplement to help me regain strength? I am postponing Radiation as I am afraid it will cause additional problems.
Tamara
______________
Invasive Ductal Carcinoma 10/06
Lumpectomy 11/06 HER2+
A/C-fin. 06/07 4 cycles
Taxol-fin. 09/07 4 cycles
Herceptin- Every 3 weeks-completed 4 cycles to date

[tousled1]

Tamara,

Try Glucosamine/Chondroitin Complex. It was recommended to me by my neurosurgeon after my back surgery. I find that it helps immensley with the bone/joint pain from Herceptin.

[gin-tx]

Side effects of Herceptin.

I too am on Herceptin and have joint pain but have not had the other drugs that you have mentioned you were being given. How does your thyroid problems affect your joints and bone pain. My onc sent me to a pain mgt dr who was not sure he could help me, he had my records from onc and my health history. He gave me an Rx for a pain patch and it has helped tremendously. I cut them in half, original pain was mid back, so I would use a half patch, it can only be used for 12 hours on, 12 off. I got relief and the pain got better, which the dr was quite pleased. Then I began having pain in the lower back just below waistline. I would use a whole patch which I did several days last week, got relief. I don't know if this is something to be used over long term but you might ask your dr about them. Every situation is different. I am much older than you are and have some leg pain, my biggest difficulty in walking is in a shopping center or grocery store, the floors are concrete and I don't last long so I don't get much done. Keep me informed of your progress. And if you are going to be doing radiation will you begin soon? I had a tumor on my spine that was detected right after bc diagnosis and it had to be dealt with (had 18 radiation treatments to shrink the tumor from pressing on my spine) so I missed doing any radiation. By the way I had BC in 1995, no chemo, only radiation at that time which was pretty standard treatment.

hugs,

ginkott1@aol.com

[tousled1]

Mary Lou,

Sounds like you managed to get through your treatment without too many side effects. As to when you will begin to feel normal again -- big question! Everyone is different and responds and bounces back differently. The hair, eyebrows, eyelashes, etc will grow back and about at the 4 month mark you should have a decent head of hair. A few months after you finish Herceptin you should start to notice improvement with bone/joint pain, running nose, etc. Just take things one day at a day and enjoy each and every day. You may find that you tire easily and this is quite natural. It takes your body a long time to get over all the effects of chemo. Good luck to you

[Kathy S in Tokyo]

I've noticed light vaginal bleeding for two days after each Herceptin/Taxol treatment. I get Herceptin weekly and anti-nausea, steroids and Taxol three weeks out of four. For the past 6 Herceptin/Taxol weeks I've noticed light vaginal bleeding and a little discomfort (like the beginning of a UTI) for a few days, sometimes beginning while I'm having the IV. It always fades away by the wnd of the third day and my onc. doesn't seem concerned about it.

We'd talked about a total of 12 combo treatments before reverting to Herceptin alone (hi ho the dairy oh, Herceptin stands alone) but now he feels that as the treatment is so effective in shrinking my lung mets and I've been tolerating it so well, I should stay on the boat for up to 20 treatments before setting the Herceptin cruise control and going into maintenance mode. Yesterday was treatment 12, so I'm not done yet after all but am kicking some major butt while I can.

Has anyone else had this kind of spotting?