MDS, angiodysplasia and thalidomide

[Paolo D.]

Hello,
my mother (71yrs) was diagnosed with MDS (AREB2, 12% blasts) in April 2010, and went trough 8 cycles of Vidaza until December 2010 with little improvement (10% blasts). Since then, she has been receiving only supporting care, with 1 transfusion every 10-14 days (HgB from 7 to 9.5). Recently her HgB dropped to 6, because of probable angiodysplasia in the intestine causing blood emorragy (dark blood in feces).
On the one side, gastroenterologist says this is not linked to MDS, and suggest treatment with thalidomide or octreotide (somatotatin).
On the other side, emathologists say this is likely linked with MDS, and are skeptical about the use of thalidomide.
Has someone had similar experiences, with angiodysplasia, MDS and maybe thalidomide? What are thalidomide side effects?
Many thanks for any answer or suggestion,
Paolo

[Birgitta-A]

Hi Paolo,
You don't write anything about your mother's platelets and WBCs - when the platelets are low we can get bleedings often from the intestines.

Thalidomide has many adverse effects - neuropathy (the nerves to the feet don't function properly) and constirpation are common http://www.medicines.org.uk/emc/medi...IRABLE_EFFECTS

I have been taking Thalidomide - a very low dose - since June 2010 with very good results. I got low white blood cells when I took Thalidomide 50 mg/day and I only tolerate 4 caps/week. Then Thalidomide should be combined with Prednisone or a similar drug for best results. I still take Prednisone 5mg/day. I have no adverse effects except the low white blood cells initially.
Kind regards
Birgitta-A
72 yo, dx MDS Interm-1 2006. transfusion dependent from dx until Sept 2010 after 3 months with Thalidomide. HGB now 134.

[Paolo D.]

Hi Birgitta,
many thanks for your reply.
The main problem with my mum seems to be HgB, with WBCs and platelets being ok in the past 6 months (platelets roller-coasting between 30 and 120, with the peak of 120 right now during this latest bleeding).
Next week my mum will have a colonoscopy, and then hopefully we will know what to do next...
Best regards
paolo

[Birgitta-A]

Hi Paolo,
You know your mother can have had the intestinal bleeding during a long time before you could observe the blood so the low HGB could be due to this bleeding. Hopefully they can stop the bleeding.

Octreotide is a growth hormon and I have never seen a study where they used that for MDS.
Kind regards
Birgitta-A

[Chirley]

Hi, When I had an office in the Gastro ward of the hospital, I noticed that they used a combination of omeprazole and octreotide to stop gastrointestinal bleeding.

Regards

[bobrock4]

I have found this thread looking for treatments for angiodysplasia for my father, 79yr with HCV and Cryoglobulinemia.

He's living with a strong anemia and he's making transfusion every 3-4 weeks. Doctors have made a laser treatment applied through the endoscope. But after few days he had again low HgB (8-8,5), anemia and fecal occult and visible blood.

In this summer, with hot weather he feels very tired and he has some bad moments in which he believes to fall.

Even if HCV is quite surely the cause of these diseases, we hope about thalidomide treatments. There are no doctors here that would like to use this drug on my father. We (me and my family) would like to know your experience about this drug and if you know some doctors in Italy that would use this treatment.

Thanks and ciao.
Roberto