dosage of thalidomide

[Neel]

Hi ppl,

Our doctor has advised dosage of thalidomide at 50 mg to be increased to 200 mg within 10 days. Wanted to confirm whether ppl here using thalidomide are taking the same dosage ?

Regrd,

Neel

[knstone]

Hi Neel,
Thalidomide dosage varies from doctor to doctor. Doctors at the Univ Ariz Cancer Center (an MDS center of excellence) did a lot of research with Thalidomide and Revlimid, they stated that dosages over 100 mg/day did not help the response but added to the neuropathy and dizziness. I've always tried to use the lowest dose that seemed to work. Early on my doctor had me try 150 mg/day but it seemed to cause too much dizziness. Over the 2.5 years I was on Thalidomide I used a dosage of 75mg/day average by taking 50 mg one day followed by 100 mg the next day.

You asked about my counts when starting Thalidomide. The counts seem to drop initially when one starts a new medication. Here were my counts:
Date Hgb WBC platelets
4/21/04 11 2.5 88 start day
4/28/04 11 1.8 64 drop in WBC, Platelets
5/05/04 11 1.5 69 took Procrit for next 7 wks
5/12/04 12 1.3 84 Started Neup for several wks
5/26/04 13 2.1 125
6/09/04 14 3.7 172
As can be seen I started to respond within 4 to 5 weeks.
My counts held very good until 04/2006 or 2 years, they then started a slow decline until we stopped the Thalidomide in Jan 07 and started Revlimid.
My doctor continued to give me Procrit and Neupogen occasionally.

Revlimid had a good response for approx 1.5 years at which time the WBC and Platelets were dropping, but the Hgb held very good. This is characteristic of Revlimid in some patients; helps Hgb but hurts WBC and Platelets.

Another problem with Thalidomide that I forgot to mention in another post to you is that it causes SEVERE CONSTIPATION, at least it did in my case. I had to take stool softners and laxitive pills. Senna-S at Walgreens and Miralax are good products in the US.

Hope this helps a little.

[Birgitta-A]

Hi Neel,
As far as I understand most doctors now use low dose Thalidomide as Kirby wrote. Many years ago they tried to give the patients up to 800 mg/day but the patients could not take so much. Then the researchers found that lower doses gave better response and that the drug should be combined with Prednisone the first 3 months in tapering doses.

I started with 50 mg Thalidomide per day June 2010 and should have been taking 30 mg Prednisone/day according to my weight but took only 20 mg/day because of sleeping problems with Prednisone.

After 3 weeks my WBCs decreased and I had to take still lower doses of Thalidomide. Now I take 50 mg 4 days/week with very good result. Four weeks after starting with Thalidomide my platelets increased from 22 to 43 - they are now about 110. After 3 months I didn't need blood txs any longer. I had then been tx dependent since dx 4.5 years earlier. My HGB is now about 12.5.

Hope your mother will have a good response !
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006, tx dependent from dx, Thalidomide, Prednisone, Exjade, Neupogen

[Neel]

Thanx Kirby and brig for your valuable inputs, my father is on 100 mg dose per day. Yes he is also facing severe constipation problem, he has been on the drug for last 12 das but no response yet. He has two platelet transfusions SDP and one blood tranfsusion after starting with thalidomide. He is also feeling very weak , fatigue and tired , is it due to thalidomide ? he never felt this weak even at 6.5 Hb, but at 8 hb he is feeling worse then that. Even the platelet being transfused are not giving much of response. they are not even lasting 4 days. (SDP is from apherisis from single donor on cell seperator machine). Will revolade (promacta) be of any help ? our doctors are not recommedning it and says that it wont be of any use ?

regrds

Neel

[Birgitta-A]

Ni Neel,
Do yout father not get Prednisone or a similar drug ? The combination of Thalidomide with Prednisone gives a better result than Thalidomide as the only drug. Prednisone seems to protect the bone marrow in some way so the counts don't decrease so much.

Thalidomide has fatigue as an adverse reaction. Prednisone in the morning helps because that drug makes you more active. Ask his doctor if your father can try 50 mg Thalidomide per day.

As you can see Kirby has Promacta and he is as far as I know one of the few MDS patients who got that drug outside trials.

After 4 weeks with Thalidomide my platelets increased and after 3 months I didn't need blood transfusions. My WBCs decreased initially and I still take 2 Neupogen injections/week - the same dose since 2007.
Kind regards
Birgitta-A

[Neel]

Hi brig,

i have consulted many doctors here, they are strict against predisone and have not recommended it with thalidomide. I dont know why. I even cited your case and suggestion of using peridisone, however evenafter that they were not inclined to advise predisone.

My fathers WBC are showing marked decline, infact even after neupogen they are not showing any improvement, maybe it is due to side effect of thalidomide.

I am giving him 100 mg and 50 mg alternatively just like Kirby. 100 mg causes very high constipation and fatigue, however the side effects (constipation and fatigue of 50 mg are manageable).

he has already taken the medicine for 2 weeks, however there is no response yet. Infact his platelets or transfused platelets are not even lasting for 5 days. we are hoping and praying that the thalidomide shows its positive effects soon.

regards,

neel

[Birgitta-A]

Hi Neel,
Then you have really done everything to make sure that your father gets the best treatment. Now we can only hope that he will respond!
Kind regards
Birgitta-A