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Myeloma

Myeloma is a cancer of plasma cells in the bone marrow. If you're suffering from myeloma, or know someone who is, join this support group.

Helpless

SC1348
Posted by

Hi guys,

im a new member. I have been following this forum since  My father in law was  diagnosed with MM (4 weeks ago) his condition was diagnosed pretty late and he has been in and out of hospital. Feeling really helpless as I don’t know how to help him or support him. The MM has caused severe pain all over the body but mainly spine. He’s unable to get up himself now. Currently in hospital because he’s got oral thrush/blistering inside the mouth (could be a reaction to the chemo) he’s unable to  eat or drink atm. Did anyone experience these symptoms? Or any Inability to walk or get up without support? 

Johnty
Posted by

Dear

4 weeks is very early in the treatment for myeloma and you should find that as treatment progresses his symptoms will improve a great deal. When there is bone involvement in the vertebrae this is very painful so make sure he is getting the right level of pain relief while he waits for the chemotherapy to kick in.

in regards to the thrush, I used a antibacterial mouthwash and nystatin during my treatment and a soft toothbrush and found this very effective along with the antibiotics I was prescribed so hang on in there I’m confident the medical staff will get on top of things soon.

you can provide support in many ways , but the most useful way is to keep things as normal as possible when he is at home, provide assistance with everyday tasks like shopping and household tasks, prescriptions and dispensing pills for the week into a pill tray, and good record keeping of appointments and contacts which your father in law might find useful like the district nurse .

keep your chin up, things look bleak in the early days but most patients respond very well to induction treatment and things will improve soon

best wishes

jane

greg777
Posted by

Hi SC1348,

I just wanted to add to Johnty’s excellent reply that I have come across several people who have been bed-ridden on diagnosis with myeloma, but who have considerably improved once the treatment has had time to work. Myeloma is known to attack the bones, so once the medical teams get on top of the myeloma, they will stop attacking the bones and the bones will have time to heal.

It might take a while to see improvements, but keep hanging in there, and hopefully the myeloma treatment will do the trick soon.

Greg

SC1348
Posted by

Thanks for your response guys. FIL has been in hospital for a week now with extremely sore inflamed throat. Unable to swallow and has a very dry mouth. He is nil by mouth and on feeds. Docs have said his larynx is very relaxed, causing choking and has a lot of phlegm he is bringing up.

 they will do further checks to see what’s going on his throat. He’s also gasping to breathe. It crazy to see how quickly he has Deteriorated in the last couple of weeks. Could be a side effect to the VDT treatment so they are reverting to traditional chemo. had this happened to anyone? i know it’s unrealistic to ask but how long until you start seeing improvement? :( 

greg777
Posted by

Hi SC1348,

I am so sorry to read what your FIL is going through. I don’t have any experience of this, so just wanted to write that I am thinking of you at what must be a very difficult time.

Greg

SC1348
Posted by

Sadly, my father in law passed away last week. There are many factors which contributed towards his sudden death. main one being the myeloma being diagnosed very late, the drs doubling the thalidomide tablets and just side effects of the chemo. Within the space of 5 weeks of being diagnosed he sadly passed. Thank you for your responses. This forum is great for people who have no idea of what myeloma is and what to expect. 

greg777
Posted by

SC1348,

I am so so sorry to read about your father-in-law. It’s so incredibly sad that the medical teams weren’t able to help him out, it is such a horrible disease. My heartfelt condolences go to you and the rest of your family.

Greg