joint pain with Herceptin

chloe612

Hi everyone!

I'm new to this site. I've been through 6 rounds of chemo. (Carboplatin, Taxotere, Herceptin.) 22 days of radiation. Herceptin continued every 3 weeks 'til June.I'm hoping to get some advice. I've done 2 rounds of just Herceptin, and started having severe joint pain everywhere. I was feeling better after radiation, but feel like I'm going downhill again. Has anyone else had joint pain with Herceptin, is there anything that gave you some relief so you could function? (I've phoned my onc. about this twice. 1st time he told me to take 400mg. of Motrin, 3 x/ day. That didn't help. 2nd time his nurse told me he said that joint pain wasn't a side effect of Herceptin, recommended phys. therapy. I'd really appreciate any advice.

Thanks so much!

dianehelen

Boy I would really ask to
Boy I would really ask to talk directly to the doctor. I can't believe an oncologist would say joint pain is not a side effect of herceptin. Just do a Google search and there is a ton of info about it including lists of possible side effects listed by the drug company itself.

I'm getting ready to start that same chemo cocktail and hearing about the joint pain is one of my main fears, as i already suffer with knee, hip, and back pain from arthritis :-( ugh the fun never end.

Hope you get some better answers and some relief

HerceptinLegPain

I too have had a really hard

I too have had a really hard time with Herceptin, I am still taking pain pills in a small dose to deal with it, some days I can't keep going from the pain, and if your doctor is not listening to you, then change doctors.  Your pain is not being adequately managed and don't take no for an answer, be prepared to fight.  I don't know what is going on in the oncology community that they can lie to our faces like that, but I for one will not put up with it.  If they are so uneducated about the drugs they prescribe, if they don't know about Herceptin joint and leg pain, then I must doubt their other decisions about my treatment.  Bring family members or friends with you and let them know that you are suffering.  I know you are weak right now, but stand your ground and do not allow your problems to be dismissed.  It's in the freaking product information, and also call Genentech and enroll in their Herceptin program, they don't really offer you anything beyond information, but at least you know that your symptoms are being reported to the drug company through post-marketing surveiillance.  Please do this.  Tell your doctor you did this.  They clearly don't report these symptoms.  Step up Genentech and let these doctors know the deal with this Herceptin leg pain.  My last treatment was Oct. 18 and I am still in significant pain. 

HerceptinLegPain

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pumpkin4

HerceptinLegPain said:

I too have had a really hard

I too have had a really hard time with Herceptin, I am still taking pain pills in a small dose to deal with it, some days I can't keep going from the pain, and if your doctor is not listening to you, then change doctors.  Your pain is not being adequately managed and don't take no for an answer, be prepared to fight.  I don't know what is going on in the oncology community that they can lie to our faces like that, but I for one will not put up with it.  If they are so uneducated about the drugs they prescribe, if they don't know about Herceptin joint and leg pain, then I must doubt their other decisions about my treatment.  Bring family members or friends with you and let them know that you are suffering.  I know you are weak right now, but stand your ground and do not allow your problems to be dismissed.  It's in the freaking product information, and also call Genentech and enroll in their Herceptin program, they don't really offer you anything beyond information, but at least you know that your symptoms are being reported to the drug company through post-marketing surveiillance.  Please do this.  Tell your doctor you did this.  They clearly don't report these symptoms.  Step up Genentech and let these doctors know the deal with this Herceptin leg pain.  My last treatment was Oct. 18 and I am still in significant pain. 

Lots of joint pain for me

Herceptin caused me alot of joint pain as well as severe cold symptoms. I just finished less than a month ago. I have had a cold for 1.5yrs now, can't wait for that to end. My onc said it is not common for herceptin to cause bad joint pain but, it does happen. She gave me hydromorphone which i took on the worst days of the cycle which did help the pain. In the beginning I got taxol/herceptin, we thought the pain was coming from the taxol. After I finished that round I got 6 AC rounds, then back to herceptin. When I was on the herceptin alone we realized that it was the herceptin and not the taxol causing the pain. Talk to your dr, you should not have to be in pain if it can be managed. I was stage 3a like yourself, the journey is hard enough, unnessary pain is not needed. You need pain meds stronger than motrin. Good Luck.

hugs and prayers

Lisa

chloe612

dianehelen said:

Boy I would really ask to
Boy I would really ask to talk directly to the doctor. I can't believe an oncologist would say joint pain is not a side effect of herceptin. Just do a Google search and there is a ton of info about it including lists of possible side effects listed by the drug company itself.

I'm getting ready to start that same chemo cocktail and hearing about the joint pain is one of my main fears, as i already suffer with knee, hip, and back pain from arthritis :-( ugh the fun never end.

Hope you get some better answers and some relief

Thanks so much for responding! Since you're just starting the cocktail, I'll tell you that the Taxotere was the hardest for me on my body. The other 2 you don't really notice. I didn't start having the joint pain until I was done with the 6 rounds and just doing Herrceptin alone. Everyone's experience is different. Hang in there!

Have a Happy New Year!

chloe612

HerceptinLegPain said:

I too have had a really hard

I too have had a really hard time with Herceptin, I am still taking pain pills in a small dose to deal with it, some days I can't keep going from the pain, and if your doctor is not listening to you, then change doctors.  Your pain is not being adequately managed and don't take no for an answer, be prepared to fight.  I don't know what is going on in the oncology community that they can lie to our faces like that, but I for one will not put up with it.  If they are so uneducated about the drugs they prescribe, if they don't know about Herceptin joint and leg pain, then I must doubt their other decisions about my treatment.  Bring family members or friends with you and let them know that you are suffering.  I know you are weak right now, but stand your ground and do not allow your problems to be dismissed.  It's in the freaking product information, and also call Genentech and enroll in their Herceptin program, they don't really offer you anything beyond information, but at least you know that your symptoms are being reported to the drug company through post-marketing surveiillance.  Please do this.  Tell your doctor you did this.  They clearly don't report these symptoms.  Step up Genentech and let these doctors know the deal with this Herceptin leg pain.  My last treatment was Oct. 18 and I am still in significant pain. 

thanks!

Thanks for your suggestions! I will follow through. I'm just really glad I'm not alone with this Herceptin experience.

God Bless!

chloe612

pumpkin4 said:

Lots of joint pain for me

Herceptin caused me alot of joint pain as well as severe cold symptoms. I just finished less than a month ago. I have had a cold for 1.5yrs now, can't wait for that to end. My onc said it is not common for herceptin to cause bad joint pain but, it does happen. She gave me hydromorphone which i took on the worst days of the cycle which did help the pain. In the beginning I got taxol/herceptin, we thought the pain was coming from the taxol. After I finished that round I got 6 AC rounds, then back to herceptin. When I was on the herceptin alone we realized that it was the herceptin and not the taxol causing the pain. Talk to your dr, you should not have to be in pain if it can be managed. I was stage 3a like yourself, the journey is hard enough, unnessary pain is not needed. You need pain meds stronger than motrin. Good Luck.

hugs and prayers

Lisa

Thanks Lisa!

Thank you Lisa!

It's good to know there are docs out there who do recognize this and that there are things that can be prescribed. I'm doing the physical therapy, and it seems to help. Sorry to everyone for responding individually. I haven't figured out how to respond to everyone at once.

prayers back to you Lisa!

Lorrie

chloe612

pumpkin4 said:

Lots of joint pain for me

Herceptin caused me alot of joint pain as well as severe cold symptoms. I just finished less than a month ago. I have had a cold for 1.5yrs now, can't wait for that to end. My onc said it is not common for herceptin to cause bad joint pain but, it does happen. She gave me hydromorphone which i took on the worst days of the cycle which did help the pain. In the beginning I got taxol/herceptin, we thought the pain was coming from the taxol. After I finished that round I got 6 AC rounds, then back to herceptin. When I was on the herceptin alone we realized that it was the herceptin and not the taxol causing the pain. Talk to your dr, you should not have to be in pain if it can be managed. I was stage 3a like yourself, the journey is hard enough, unnessary pain is not needed. You need pain meds stronger than motrin. Good Luck.

hugs and prayers

Lisa

Thanks Lisa!

Thank you Lisa!

It's good to know there are docs out there who do recognize this and that there are things that can be prescribed. I'm doing the physical therapy, and it seems to help. Sorry to everyone for responding individually. I haven't figured out how to respond to everyone at once.

prayers back to you Lisa!

Lorrie

tommaseena

chloe612 said:

thanks!

Thanks for your suggestions! I will follow through. I'm just really glad I'm not alone with this Herceptin experience.

God Bless!

pain

My oncologist sugessted that I take Claratin for my muscle and bone pain while I was on Herceptin treatment.  I still take it every day even though my treatment ended in July of 2010.

Margo

tommaseena

chloe612 said:

thanks!

Thanks for your suggestions! I will follow through. I'm just really glad I'm not alone with this Herceptin experience.

God Bless!

pain

My oncologist sugessted that I take Claratin for my muscle and bone pain while I was on Herceptin treatment.  I still take it every day even though my treatment ended in July of 2010.

Margo

smalldoggroomer

I too had a lot of pain when

I too had a lot of pain when I was on chemo the first time. I tried everything they told me to do but it got so bad it was getting difficult to get up and walk. Mostly my knees hips and feet. I finally tried Flex free from GNC. That gave me relief. after about three days I noticed a big difference. I took it religiously and the pain went away completely. It worked for me very well I hope it will for you. It is kind of expensive but it did the trick. And Dr said I could take it. I keep it on hand because I am back on chemo because of mets so far I haven't needed it. But will not hesitate at the first sign of pain coming back I wish you luck and hope your pain goes away. Take care Darlin

 

Best wishes Kay

Alexis F

chloe612 said:

Thanks Lisa!

Thank you Lisa!

It's good to know there are docs out there who do recognize this and that there are things that can be prescribed. I'm doing the physical therapy, and it seems to help. Sorry to everyone for responding individually. I haven't figured out how to respond to everyone at once.

prayers back to you Lisa!

Lorrie

I'm very happy that the PT is

I'm very happy that the PT is helping you Lorrie!  Keep your onco up to date on how you're doing and if you still need more help, insist on it.

 

Good luck, Lex