Side effects question
 

Hi my wife is triple positive And was diagnose Dec 2013. TCHP began in Jan with 6 cycles every 3 weeks through April and taxotere and carboplantin was complete. Herceptin and perjeta continues on a three week cycle through Dec 2014. Bilateral mastectomy w/3 nodes in May with no cancer found. While continuing herceptin and perjeta she started getting really stiff in her hands and then shoulders and knees and continues to get worse. Onc says taxotere is the cause for the pain and stiffness however we are now wondering if herceptin is the source. Her cycle stopped in February and has not returned so menopause could be the source. Seems there are a number of things that could cause these symptoms.

Your experience or input appreciated.

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Clint I was on taxol and herceptin every week for 12 weeks with only a running nose ( herceptin) and some mild neuropathy ( taxol).i am now only on Herceptin every 3 weeks (so dosage is higher) after my 3rd infusion I have experienced some fairly severe joint pain in both hands, knees , toes and now a little in my shoulder and hips. I also have some severe stiffness in my hands. It's difficult at times just to hold dishes or even make a fist. I am currently taking ibuprofen and 2 Percocet for the pain. From what my oncologist says this could get better or worse with each infusion. As she explains it the Herceptin basically drys up the lubricant in your joints so in order to replenish it ( lubricate joints a bit) you need to get up and move. Most of the severe pain is at night or early morning. When I move it does give some relief but not total.i am as of today 46 but feel like a 90 year old with arthritis at times. Doctor can put me on stronger pain pills but ummm sorry I still have to drive. I go in for another infusion this Friday, my planned conversation is if after this next tx the pain gets worse then maybe we can go back to herceptin once weekly at the lower dosage as I tolerated that very well. I plan to go back to work in December or January but there is no way I can do that if I have difficulty just holding a pen! I still have 6 1/2 months of this herceptin to go. As for the side effect of perjeta I never took it so no answers there. The good news is Oncologist says once I'm done with the Herceptin the joint pain and stiffness will resolve. This all sucks so bad! It seems once we get a handle on a certain tx or side effect we then move on to something else that has yet another issue. After 9-10 months of treatment and pain and in general just not feeling good this gets very taxing on the body and mind. I just keep telling myself this is saving my life and as bad as it gets I will eventually make it to the other side of post tx... Please don't be afraid to ask for pain meds when indicated and if one doesn't work then try something new. Personally I'm sick of pain medication but physically I need it.

Re: Side effects question
 

Severe joint pain here...my stats in my signature. Also had neulasta shots prior to chemo.

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Thanks for the info.

Nurse. The onc switched Wen from pain pills to a 72hr pain patch. It takes the edge off without making her unable to function.

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Clint what type of 72 hr pain patch did they put her on?
And is it working for her?
I'm thinking that might be the thing for me as well... 6 1/2 more months of this and doing Percocet ugh...

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Nurse

Fentanyl transdermal system 12mcg/hr. She prefers the patch vs pills. It's a consistent relief that takes the edge off without the drunk feeling. If needed the onc said there are stronger patches.

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Debbie. She starts tamoxifen this week. Onc was waiting for the radiation to be finished before starting tamoxifen. I'm really worried symptoms will get worse from the tamoxifen.

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Not sure you can blame Herceptin for any of that. I think the hormonal treatments are a more likely culprit.

Sorry she's having a tough time. Keep asking questions and looking for answers. Hopefully it'll get resolved soon.

All the best,
Amy

Re: Side effects question
 

Clints72,
you may want to look into having your wife's Herceptin mixed with just WFI. The diluent that comes with the Herceptin has a small amount of alcohol, can't remember the type right now. I had such a hard time until I started having my Herceptin mixed with the WFI. I just found out I'm stage 4. Would not be able to do the Herceptin with the alcohol. Please talk to her doctor, it really made a difference for me.

Re: Side effects question
 

Hi Susan...I have a few infusions of Herceptin iremaining ...just switched to the 3 wk. dose beginning of June......and have just begun taking Arimidex...what I notice is that some joint pain ... but not bad...I already had arthritis in spine, knees...that was not horrible...and have not taken anything really...I now am thinking I will try ibuprofen is needed. I feel the Herceptin has delayed my mouth /taste, etc. from recouping? I finished chemo last Dec. Since beginning Arimidex my mouth has gotten worse:/ I truly don't even want to think of food...no matter what I try it is the same "taste" and even when not eating... but I do eat and have made myself...keep a health diet...I go clean my mouth when done...and try to distract myself...I also have neuropathy as a result of Taxol... no improvement from it as of yet. I am taking L-glutamine/as per oncologist/daily. What a journey !
thank you for any thoughts you may have.
CLD

Re: Side effects question
 

Thanks valley girl. I'll ask about WFI.

CLD. biotene toothpaste made a big difference for my wife and she takes lyrica and gaberpentin for neuropathy.

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I also used Biotene toothpaste and mouthwash. It can take a long time for residual effects to clear up.

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Clints72 thank you for those tips

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susan w....
violence?

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Just edited!! Love the auto correct that prints what we think we spell!!!!!

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Valley Girl, please define WFI. I used to be active and now struggle to do yoga and losing ABility to use hands while on herceptin to list just a few reactions I am having. I negotiated a dose reduction from 330 to 275 and now getting some cognitive ability back and can skip oxy now but still physically handicapped from herceptin ... If I can explain WFI on Monday's treatment maybe I can fix the disabled symptoms

Nurse4u2day, thank you for statement regarding the Doc says symptoms improve after herceptin completed since all my Doc have never heard of any issues associated with herceptin. The dose reduction also stopped the 9 months of nose bleeds, before herceptin my only nose bleed was from a hockey incident in 78. But I still have unexpected sudden loss of balance issues. Trying to learn how to use site, but my details are in the link for 'Please post your two cents on herceptin side affects real or received '

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Hi Cif,
Sterile water for injection. Herceptin comes with a bottle of diluent which contains alcohol. ask for yours to be mixed with just sterile water. It made all the difference for me. I had a lot of pain and trouble just getting out of bed in the morning. Hope this helps and please keep me posted

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Valleygirl, they were clueless as to how it was mixed and indicated take or leave it. I need to try to squeak again but don't want to alienate either. Now to find a gizmo that will keep bath water hot. Going to spend today with Epsom salt. Shocking how much more expensive life is with an illness (e.g., more hot baths, compression socks, clothes/shoes as body changes, foot/calf massagers, wigs, (everyone here knows the long list). I have a new vigor to volunteer and donate more, had no idea until in hot seat myself. knee was size of bowling ball this morning and both thumbs immobile for about 4 hours this morning, thank goodness for those that post at different links that symptoms improve once Herceptin completed, that info is priceless when in a position of suffering and not knowing if perm. For those reading this, please post more about symptoms before and after Herceptin, it is pretty scary having issues and not knowing if will improve once treatment is finished. Nurse4u2day and Clints72 lifted my spirits up soooo much knowing I was not alone and offering solutions. Wow, great husband to support his wife and posting on site - thank you.

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Cif,
They need to call the pharmacy and ask them to mix it with water. Call Genentech @ 866-449-HER2 and they can email a note for your doctor telling him about the alcohol. Hope this helps. Don't give up. :)