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

[kat in the delta]

I also forgot to mention that I have brown spots that go up my ankles like socks... appearing since being on Herceptin, and that my ankle swell even tho' I am thin and taking a fluid pill.
My Dermo. said it was from poor circulation..and the brown spots were iron deposits..anyone want to comment on this..?? please rsvp Kat in the Delta

[tdonnelly]

I too have brown spots on ankles, left wrist (previous vein damage done at time of Muga Scan) and also on thyroid surgical scar all since starting Herceptin. The one on wrist is painful at times. Ankles are also swollen. What does your dr. say to do re brown spots?
Tamara
Invasive Ductal Carcinoma 11/06

[Andrea Barnett Budin]

Tamara,

When I was on Taxotere (a cousin of Taxol) I had what I call deep muscle pain in my arms and legs. And I am talking about pain! Constant. I could not find a comfortable place for myself. In bed, propping pillows everywhere. In my comfy chair/ottoman. I could barely walk. Shuffled. Kept catching my toes and tripping. Held on to walls or any thing to keep steady. Literally crawled up stairs to my bedroom on all fours. I could not stand for more than 10 minutes. I was forever looking for a chair. It was just necessary. I was that shaky and wobbly. When I caught a glimpse of myself in a mirror, I was horrified! I too looked like a little old lady.

IT WAS FROM THE TAXOTERE -- and the after effects lingered for quite some time. Eventually, after many mnths when it passed, I would occasionally get it back. When I mentioned to my onc, I know this sounds crazy (a yr and two after that chemo) but I still get that same deep muscle pain in my arms and legs, he told me it was not crazy and other patients of his had reported the same thing. I derived comfort it that.

I took pain killers (Roxicet) when on Taxotere as my defense. My onc repeatedly told me I would get no medals for bravery by suffering. MJ kept telling me -- take the pain killers at the first sign of a problem. Don't wait. It takes an hr to kick in. Don't hesitate. His *permission* helped me greatly. I take Omega 3 EPA 800 & DHA 400 twice a day and I take Flexoral at night -- all I believe help this. Oh, also Ativan! It gives major anxiety relief. Helps me be ME. I have learned (the hard way) that emotional and psychological stress expresses itself physically! My back used to be in pain 23/7. Some orthopedists wanted to operate. Degenerating disk disease, narrowing of the spine, L4...L5... But another doc -- WHO CHANGED MY LIFE -- and was a physiatrist (a real doc dealing w/the entire body and mind) helped me see the connection between being stressed out and my pain and after yrs of agony, I became pain free.

Hate to push pills, but they do fulfill a purpose and sometimes we need help. It's okay to need help. Anti-depressants chemically alter our anxiety-ridden minds and bring us relief. They give us back our lives. I was on Zoloft after metast and am now on Effexor. I feel joyful and serene, functioning and more like the true me!

I have been on a supplement regiment since '98, during chemo and now as I take Herceptin ev 3 wks. Herceptin does leave me feeling very fatigued w/somewhat flagging red bld cell counts (which are extremely low for ME and leave me feeling zonked). My cancer center isn't giving Aranesp to boost these to *non chemo* patients. Herceptin is a monoclonal antibody. I CALL IT DISCRIMINATION. BASED ON $$$$$. The injection is billed as $8,000 and Medicare and many insur co's aren't paying. (But that's a whole other discussion.)

Some of the supplements are for ENERGY which is a big issue to be grappled with. I have listed my LIST in a 6/30 thread TO "SUPPLEMENT" OR WAIT. I recall trying to list dosage and the reason for each. If you have more questions, contact me, please.

Tamara, honey, you need to whip yourself into shape as best you can. These are all the tools I used to get myself together and they have had miraculous results. I wish the same for you. Do not despair. Bc is a frightening place to be and chemo, as terrible as it can be, is the best weapon we have to annihilate those cancer cells. So, try to see this horrid phase as just that -- a part of a process -- taking you to wellness! Mentally try to troll throughout the day to find those fear-riddled thoughts, experience them, vent them, talk them out, post, post, post -- we don't mind the whining, it's THERAPEUTIC. We understand. And as soon as you possibly can, in a hr or so -- replace those awful thoughts and images with thoughts of you being victorious. Seeing yourself far into the future in vivid detail. Crossing the finish line with your arms raised in triumph. Much to do, but so very worth it...

Sending you big hugs and much loving, healing energy. I feel your pain. I have lived it. And I have survived. So will you, Tamara. So will you.
Andi

[BonnieR]

Andi, lots of good suggestions there. Thanks. You were supporting someone else but I needed to hear it too! lol. Especially the part about "no medals for bravery" by trying to slug through without benefit of the meds that are offered to ease the bad times and/or pain...
Just this morning I was telling my husband that I need to remember to take an Ativan prior to chemo next week. Last time I did not (wanted to be "clear" when seeing the onc) and it was stressful when they had trouble finding a vein. And just stressful in general.....

[Andrea Barnett Budin]

Bonnie, Glad you could reap some benefit from my experience. Before bc I thought I would live to be 100 and never take more than an aspirin. I would look at all the pills older people were taking and wonder what that was all about. When I was a newbie, I was all about thinking that I'd do the chemo and soldier through. Bite the bullet.

Then came the nausea! And the pain. And the frequent moments of being overwhelmed. I was facing my own mortality and I thought I could do it on my own. I found talking to those who've been there (and w/a stellar attitude) great to talk my feelings through with. And I found writing to be cathartic. Immensely so. My daughters were helpful, as they were full of love and their own fear and much support, which touched me deeply. They would relate in a general way when facing a major adversity. One extremely logical and compassionate. The other is definitely an old Soul with this spiritual way of perceiving things and a unique, gentle wisdom that stirs people. My husband was great but obviously more scared than I was. I did everything that needing doing that I was too weak to tackle and took me to every doc and test and tx -- standing stalwartly by my side. But his face! I kept asking him, Do you know something I don't know? We'd made a pact that there would be totally open honest communication between us, as had been the case all our *normal* lives together. He is the Duke of Gloom and so cynical and pessimistic, the Yin to my Yang, as I cannot stop being hopeful. It comes from my core.

But I embraced Zofran (the big guns) for the nausea, and Phenergan which worked best for me when I was just generally queasy. Night and day. Sooo much better w/these aids. Then came the sleepless nights. Then I was reading about studies that say those who work the night shift have (I keep forgetting -- is elevated or diminished) T cell counts, indicating a compromised immune system. People who do not sleep at night heal more slowly. So I set about to ask for sleeping aids (Ambien, whatever) and make it MY DUTY to get a good night's sleep every night. Lord knows I feel beyond lousy and non-functioning the day after I've been strolling through the house till 3:, 4: or 5: AM. Who wouldn't?

And I am eternally grateful for my Dr. MJ, or just plain MJ, as he calls himself when he calls. This is MJ. I just love that man! He is brilliant, kind, thoughtful, caring, cutting edge aggressive yet totally compassionate. He hears every word you say, and intimate, and responds immediately. He returns calls the same day, no matter what. He travels the country, and the world, attending, or giving, lectures and specializes in bc and lung. He can remember every detail of my med history to this day without looking at my chart (as far back as '95) and he is busy w/a horde of other patients. He has called me from airports to just check in and see how I'm doing! And when I failed to call back (the # I wrote down led me to some Chinese restaurant) -- he called the next day! You didn't call me back. I explained. He laughed. I had the right #; it was some fluke. But, the point is, he followed up. So when MJ says, You know they give medals out for bravery in this, I heard him. And I have found that advice to be irreplaceable.

I, like many, felt I'd become addicted or something. On the contrary, I take what I need and need what I take and I am functioning without pain or despair. I am the true me and for a while there I couldn't be, I was so inundated with feelings of I don't think I can do this and grave uncertainty, believing I was walking hand in hand w/death. With med help, I have the strength to work through those feelings (talking and writing) and then discarding them. Then, when I am free to connect with my Spirit, this magical power infuses me with what I call pure, unconditional Universal Love. Life becomes more beautiful than ever before and ATTAINABLE, within my reach. I can feel the sacredness of each day and I rejoice over each. I am filled w/joy and the serenity comes with the faith in my heart that I am empowered to help heal my body, command my body to do a better job. And all of us have this power! We have only to claim. It was given to us a our birthright, as we were born into this world. And we are meant to evolve to come to understand and utilize what scientists say is the UNUSED 95% OF OUR BRAINS. Surely we were meant to grow and become all we can.

Forgive my usual rambling. I just always seem to have to much more I want to say. Wanting to empower every one of us! With much loving energy...
Andi

[tdonnelly]

Andi,
Thank you so much for taking the time to help me understand what I am going through. What an inspiration you are! I'm posting your comments on my refrigerator as my daily reminder to Live Strong. I took your advise and called the onc. for a refill on my pain meds. I too am afraid of becoming too reliant on them, but know for now they are necessary to help me work and do all that I need to do daily. I see him Monday and hope to have a bone scan soon and figure out what's the best way to handle this neuropathy. I have never been one for vitamins/supplements but now realize their importance. I met a new coworker and soon discovered she had bc in 1992, she only had surgery, no chemo., no radiation while at Micheal Reese hospital and has been cancer free ever since. I am overwhelmed by how much is truly involved with bc. The surgery, chemo, radiation, meds and numerous side effects. This disease just goes on and on, which is what makes it so scary for me. Especially taking Herceptin when no one really can tells us about long term effects and how it can effect our heart/lungs. Thanks again for your kind words. Have a great day.
Tamara