Help for Herceptin Side effects

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Roninpt
Roninpt Member Posts: 8
edited June 2014 in HER2+ (Positive) Breast Cancer

Hi Everyone - I have metastatic breast cancer and last year was treated with taxotere and Herceptin.  I still receive the herceptin on a 3 week basis, and Faslodex monthly.

I too have side effects from the Herceptin that make me feel like crap, and it has been getting worse since we went from 90 min to 30 min infusions. I usually feel like I have the flu with terrible muscle aches and bad bone pain about 24 hours after I get an infusion.  I am planning to ask the pharmacist to add a saline drip, and increase the dosage time to see if that helps, but, I would also suggest some alternative treatment for side effects.

As always, check with your own physician before taking my advice, but I find I have very good results with cranial osteopathy in reducing my muscle and bone pain.  You should find someone who is an osteopathic doctor who specializes in cranial work, or a PT with MANY YEARS of experience (someone with a week-end course is not going to do it for you.)  I try to get worked on soon after I receive the herceptin, and I do find that it minimizes both my discomfort, and the length of time I feel bad.

Acupuncture helps too.  I usually get acupuncture in the week after I receive the Herceptin, and it helps to restore my energy quite a bit.  (This was more true when I was on chemo, where it was like I would get plugged in - my blood pressure would normalize, and my stomach would calm down.)  Try to find an acupuncturist who has experience with cancer.  Also, acupuncturists can really help with hot flashes and menopause symptoms for those who are being forced into early menopause.

Anyway, everyone is different, and what may work for me may not work for others, but I strongly urge anyone who feels miserable to search out both cranial osteopathy (you can find one through the American Academy of Osteopathic Physicians) and acupuncture.

Good luck to everyone, and I would be curious to hear other responses.

roninpt

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Comments

  • GointoCarolina
    GointoCarolina Member Posts: 753
    edited November 2009

    I had (and still have) quite a few side effects from the Herceptin. I got mine every three weeks and they started with a 30 minute infusion.I read on this site to try extending the infusion time,went to one hour and it definitely helped.I also read going every week as opposed to every three weeks is better,but I was so close to being done,I didn't try it.I have an excellent physical therapist and plan on going back to him in the next couple of weeks,I know I felt better when I was able to go,but my insurance has limits on how long you can go .Jackie

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  • Heathersmom
    Heathersmom Member Posts: 46
    edited November 2009

    When I finished the chemo, my herceptin infusions went from every week to once every three weeks. The drip was set for 60 minutes, after a few months the drip was changed to 30 minutes. I noticed a significant difference in how I felt. I did the 30 minute drip one more time to make sure it was the herceptin that made me feel that way and sure enough I felt more achey and tired than I had ever felt before. The next infusion I requested the drip to go back to 60 minutes the nurses asked why, I told them I felt worse when it was pushed. They asked me what I felt, when I told them I had more aches and pains and more fatigue they agreed that it was the herceptin doing that.

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  • Chaparrita
    Chaparrita Member Posts: 35
    edited November 2009

    I also am receiving Herceptin, which I refer to as a "miracle drug"  and I receive it every three weeks for half and hour.  I do notice that when it is going into me I have extreme dizzy spells and usually it puts me to sleep.  And when I leave I am exceptionally tired and go home and sleep for two days.  However it does not seem to give me pain in my body but after chemo for metastatic imflammatory  breast cancer my body was so run down and the muscles had begun to atrophy so I began to walk at the Ymca three time a week and I do not have any body pain from the Herceptin.  I started out walking very slowly for only half an hour on a treadmill but now am up to one hour and a somewhat fast pace with a substantial incline.  You might want to try making yourself walk.  I know its hard and you are exhausted but you just have to talk yourself into it.  I experience none of the HORRIBLE pain in my legs or bones now.

    Also I am on Morphine twice a day, Gabapentin, Naproxen and Tramadol.  But hey, I have NO MORE pain.  Ya hoo!  I Actually started out by doing light Yoga at home, I got the DVD at the library, I did this for about 6 months then onto the walking and boy did it help!!!

    Good Luck

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  • Roninpt
    Roninpt Member Posts: 8
    edited November 2009

    Thank you everyone, I really appreciate your input.  I am going to ask for a longer infusion, and also try to be either more hydrated or get a saline infusion as well.  Prior to getting my port, I used to drink prodigious amounts of water the day before and day of infusion, so that the veins in my arm would be really easy to get.  Now with the port, I drink a normal amount (still more than the normal person, but less than what I was doing before.)  The port insertion, and switching to 1/2 hr infusions all happened at the same time, so I will try to change both and see what happens. 

    I also think exercise is key. Swimming, walking and pilates have all helped, but those 2 days after the infusion are just so bad. 

    Oh, well.  Just keep playing the variables.

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  • suan
    suan Member Posts: 2
    edited March 2010

    I also get leg cramps. I have found drinking tonic water containing quinine helps. If you don't like straight tonic water, mix it with cranberry juice cocktail or some other juice. Diet varieties are available.

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