[Tori]

Alternatives to thalidomide or Revlimid maintenance?

by Tori on Wed Aug 13, 2014 7:16 pm

Will be seeing my doctor in a few days to talk about new treatment options.

Had a ASCT [autologous stem cell transplant] six months ago and since then have been on a maintenance plan of dex and thalidomide.

After 2 months, my platelet count dropped dramatically down to 11 and I have since had 2 IVIG transfusions and several platelet transfusion. These all lifted my counts, but after a week or two they dropped again.

My doctor took me of thalidomide 5 weeks ago and my platelet count has risen to around 50 and has pretty much stayed there. My original treatment plan, if needed, was to progress from thalidomide to Revlimid. They are now saying that I may not be able to resume my treatment with thalidomide or Revlimid as it appears my platelet count will be affected again and, regardless, platelet count would be to low for these medications.

I have the utmost faith in my Specialist, but unfortunately this will be my last appointment with her for six months as she is going on leave, so I will have a new specialist for that period of time.

I am currently being treated at a university hospital and at all times see a specialist in multiple myeloma, but every time I have had to be seen by a different doctor when she has been unavailable. They all seem to have different idea as to my medications, changing my dex dosages, etc.

I am now really concerned as to what what might happen to my treatment plan while she is away.

Has any one been in my situation where they cannot tolerate thalidomide or similar drugs, and if so what other options were you offered?

There has also been discussions about taking out my spleen, but that has been put on hold due to the fact that, if it is the thalidomide, then it would not change anything.

Have had great response from thalidomide, protein reading dropping, no neuropathy, no bad side effects accept platelet count.

Any thoughts would be appreciated!

[Dr. Jason Valent]

Re: Alternatives to thalidomide or Revlimid maintenance?

by Dr. Jason Valent on Fri Aug 15, 2014 9:25 am

It sounds as if they think you have ITP (immune thrombocytopenia). Steroids would be the treatment for this or as mentioned possibly taking out the spleen. Any other maintenance treatment (ie Velcade) would also have potential to lower platelets. Therefore, I think staying off maintence for now until the ITP issue has resolved is appropriate.

[NStewart]

Re: Alternatives to thalidomide or Revlimid maintenance?

by NStewart on Fri Aug 15, 2014 5:58 pm

Have you considered switching to one of the other myeloma specialists permanently so that you have consistency in your treatment? If you have another condition that is complicating your treatment, it would seem that consistency in doctors is important. Just a thought.

Nancy in Phila

[Tori]

Re: Alternatives to thalidomide or Revlimid maintenance?

by Tori on Sat Aug 16, 2014 4:25 am

Thank you for your replies, will be seeing my doctor for the final time on Tuesday.

She has arranged for me to be treated by the head of the Haemotology for the 6 months she is absent, have been today and had all my tests done so they will all be through for review when I see her.

Would love to hear from anyone who has had there spleen removed, what was the outcome?

[Multibilly]

Re: Alternatives to thalidomide or Revlimid maintenance?

by Multibilly on Sat Aug 16, 2014 7:12 am

Tori,

I'm clearly not a doc, so there may be much more in play here than I am aware of. But I think I would be really trying to exhaust my options with drugs such as steroid treatments, etc before considering taking out my spleen. After all, the spleen is an important component of one's immune system.

Simplistically speaking from a multiple myeloma patient point of view, and considering that you already have a compromised immune system, I think I would want all of my immune system plumbing in place to help fight infections like pneumonia, etc down the road?

[Dr. Jason Valent]

Re: Alternatives to thalidomide or Revlimid maintenance?

by Dr. Jason Valent on Sun Aug 17, 2014 8:20 am

As always, Multibilly makes a very good point. Other options for ITP treatment are available, such as the use of a drug called Rituxan [rituximab, MabThera]. Perhaps something to discuss with your doctor.