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.

Questions to ask before start of treatment.

IJH
Posted by

I am due to see my consultant next week hopefully to start treatment for Multiple myeloma.

On previous visits it was suggested that treatment would include Bortezomib and Melphalan.

I don't know what questions to ask can someone advise please and tell me what to expect from talking the drugs. 

Thank you 

Ian

greg777
Posted by

Hi IJH,

Welcome to the forum, although I am really sorry for the reasons you have joined.

There are probably a million and one questions you could ask, but here are a few that come to mind:

1. How many cycles are they planning for you? You normally take the treatment in cycles of normally 3-4 weeks. The number of cycles tend to be somewhere between 6 and 9.

2. What combination of drugs will be in your treatment. Bortezomib (also known as velcade) is relatively common. It is a proteasome inhibitor which specifically targets myeloma cells. This is normally combined with a general chemotherapy agent - it looks like you are having melphalan - and a steroid (the most common is dexamethasone). There are different options depending on your specific presentation so I would ask what they have specifically planned for you and why.

3. What side effects should they expect you to have and what should you do if you experience them? Hopefully they’ll give you direct dial numbers and a list of things to look out for.

4. You then might have specifics re: diet, exercise, holidays, longer term treatments (eg, stem cell transplants), bone strengthening treatment (eg, zometa)

I would definitely advise you to write down your questions in a notebook and take it with you. The consultant meetings usually go by really fast and you’ll definitely not remember everything. Also, it might be worthwhile taking someone with you if you can as a second pair of ears is always helpful.

I’m really wishing you all the best and I hope you get the info you need at the meeting. Please stick around and let us know how you are getting along, you should find some good experience on here.

All the best

Greg

IJH
Posted by

Greg,

Thanks for your reply, I forgot to include In  my profile that i am a fit  74 year old.

I find the experience extremely strange as I  went to the doctors with a minor problem, and following a blood test finish up with a cancer on the kidney  and myeloma. I  feel  perfectly healthy,  I am just a little anxious now  as to the treatment and worry that it will knock me back and stop my normal routine. 

Thanks for listening 

Ian 

greg777
Posted by

Hi Ian,

Myeloma is one of those diseases that can be symptomless for quite a while unfortunately, but if you are feeling healthy, then that is a good sign, as you’ve likely caught it early. Being fit will also definitely help you in coping with the treatment. I think it will depend on your regime as to whether it will upset your routine. I had to go into the hospital twice a week for injections which was a little disruptive, but you may be on a different programme. Also, if you have steroids, they can disrupt your sleep pattern, so this may also affect your routine. However, largely speaking, I coped quite well with the treatment and indeed continued working full time until I got to a stem cell transplant, so I am really hoping that you won’t find too much disturbance from the treatment.

Hope this helps

Greg

IJH
Posted by

Thanks Greg will keep you posted.

Ian