[wanda and dan]

Any advice for severe pain?

by wanda and dan on Sat Jul 12, 2014 10:48 am

Hi everyone, my partner Dan is in so much pain today with multiple myeloma. Just don't know how I can help.

He is on 95 oxycodone every 12 hours with OxyNorm for breakthrough, which he needs during the night to try and rest to get sleep, which he's not sleeping well at all.

Any suggestions please?

Quick run down through his multiple myeloma story:

• Diagnosed 2 year ago this month.
• Velcade / dex / cyclophosphamide (Cytoxan), no response.
• Thalidomide / dex, blood clot, taken off treatment which little response.
• Lenalidomide (Revlimid) / dex, paraprotein went down to 7 g/L (0.7 g/L)
• Had stem cell transplant, paraprotein went down to 3 g/L (0.3 g/dL), but became non-secretory, clever cancer.
• Biopsy after 100 day post transplant showed 100% myeloma, consultant says it may of been a hot spot.
• Then went on pomalidomide [Pomalyst, Imnovid] / dex / cylophosphamide. No response. Myeloma now in shoulders, very painful.
• Sent to London for a trial drug. Dan has to tick all boxes to get on trial, after 3 trips to London, St. Barts, Dan didn't make the trial due to platelets not right? His were 58, needed to be 75.

He's had no treatment now for 2 weeks, got appointment on Tuesday for chat with consultant, fingers crossed. But the pain he's got at the moment is really worrying me -- legs, bum cheeks, lower back, shoulder, chest, headache.

[Joy]

Re: Any advice for severe pain?

by Joy on Sat Jul 12, 2014 11:02 am

Hi Wanda and Dan,

I am so sorry to hear of your pain. That is something truly awful to go through. Is there someone that you can call or see in the meantime? I'm not in the U.K. so I don't know how that would work.

Here in the U.S., I would call my oncologist, which on a weekend would send me to the person that is working on call and they would advise me if I should go to the hospital, buy something over the counter for the pain, or if they would call in another type of drug at the pharmacy for me.

I hope you can alleviate the pain very soon.

[Joy]

Re: Any advice for severe pain?

by Joy on Sat Jul 12, 2014 11:23 am

I also wanted to add that I've found that for bone pain, ibuprofen is more effective for me than oxycodone. However, given all the different drugs that Dan is on, this really needs to be taken after consultation with some experts so that there won't be adverse effects.

Best wishes again.

[Boris Simkovich]

Re: Any advice for severe pain?

by Boris Simkovich on Sat Jul 12, 2014 3:47 pm

Hello Wanda,

I'm very sorry to hear about the pain that Dan is experiencing.

I would second Joy's advice to seek aid for Dan from a medical professional. There are a number of additional medications that Dan could potentially take to relieve his pain. However, with myeloma patients, you have to take into account factors such as the condition of their kidneys. Certain pain medications are not such a good idea when a patient has, or is at risk of having, kidney issues.

For example, ibuprofen is exactly one of those medications. Its dose needs to be watched carefully in patients with kidney issues. (I believe Joy mentioned in a previous posting that she was given the okay to take ibuprofen for her pain after consulting with her physician.)

Again, there are a number of options that could help Dan, but you want to choose from among those options with advice from someone who can make sure the pain treatments don't adversely affect Dan's health.

Perhaps others here in the forum can offer suggestions on treatments they have received for pain in addition to those that Dan already is taking -- just so you aware of some of the options.

[wanda and dan]

Re: Any advice for severe pain?

by wanda and dan on Sun Jul 13, 2014 7:20 am

Thank you for your replies. Good news is that this morning Dan is moving a lot better and the pain is not as bad. He didn't get much sleep, but he doesn't anyway. He did worry me yesterday as I had not seen him in that much pain since he was diagnosed.

We're up to the hospital Tuesday to see his consultant and will be mentioning the pain then and hoping for another treatment plan, fingers crossed.

Thanks again for your support.