Good effect after Thalidomide treatment

[Birgitta-A]

Hi All,
May 2006 I sometimes felt breathless and got my blood tested. My HGB was 7.0 and my platelets 65. I was sent with a taxi to a very good hospital - the Karolinska Institute in Stockholm, where I live. I got the dx MDS Interm-1. I was tx dependent from dx. My WBCs were low but normal initially but after several infections I got Neutropenic fever Sept 2007. Since then I take 2 Neupogen injections/week. I have no other diseases and I am asymptomatic.

I have got 142 units of packed red blood cells so I have been treated with Desferal iv since Aug 2007 and Exjade since Aug 2009.

Everything was OK till May 2010 when my very fibrotic bone marrow didn't function and I needed transfusions every week . My platelets were only 22. My doctor persuaded me to try Thalidomide - before I only wanted supportive treatment because I was afraid of adverse reactions.

I have responded very well to Thalidomide and not got any transfusions since Sept 2010 . My HGB today was 11.9 and my platelets 96. I still need Neupogen. My ferritin level, that was 5600 July 2010, is now 1100 and when it is less than 1000 I am going to stop taking Exjade.

I know Thalidomide can stop working any time but I am thankful for the positive result this far.

I am 71 yo and a widow - I have children and grandchildren.
Kind regards
Birgitta-A

[chris]

Hi Birgitta

That's very encouraging and so glad that you are transfusion-free now. That must make a huge difference to your energy levels. As I understand it, Thalidomide (I think it's called Lenalidomide/Revlimid here but it is the same drug) does work very effectively but only if you have the chromosomal abnormality of -5q deletion? Is this your situation because, if not , and the thalidomide is working then that treatment could be something worth exploring in the UK? I think I read that it was being trialled for non -5q deletion MDS patients too?

Do you have any side-effects from the drug or is it all good?!

It's good to hear about different treatment options in other parts of the world and so encouraging that there are regular MDS International Conferences where the medical experts can share their good practice.

Thanks for posting such great news.

Chris

[Birgitta-A]

Hi Chris,
Thank you for responding! You know Thalidomide is an old drug that caused 12000 disabled children 1950-60 because their mothers had taken Thalidomide as a sedativum. Revlimid is a second generation immunemodulator. It is much stronger than Thalidomide and lacks the adverse reaction neuropathy, that is common with Thalidomide.

My WBCs decreased when I started to take Thalidomide so I only take 4 caps á 50 mg/week instead of 7 caps.
Kind regards
Birgitta-A

[chris]

Hi Birgitta

Yes. I am of the generation of women that know all about the disaster that was Thalidomide! It happened just before I had my children so I was very careful not to take anything - even prescribed medecines- while pregnant. It's interesting how they have found another use for it.

So, I'm sorry for asking again but are you saying that you do not have the 5q deletion chromosomal abnormality? Would this be standard treatment for all types of MDS in Sweden?

I hope you continue to avoid infections caused by your low white cell count.

Best wishes

Chris

[Birgitta-A]

Hi Chris,
My daughters were born 1965 and 1967, so like you I dared not take anything - not even iron - during pregnancy. Thalidomide inhibits small blood vessels to rapid growing cells (for example in tumours) and they have used it for years for leprosy.

I forgot to write that I have the chromosome aberrations -12p and -X. It is not common to treat MDS with Thalidomide in Sweden but I have so severe bone marrow fibrosis that my doctor thought we should try Thalidomide.

I live like I am neutropenic (have very few of the type of WBCs called neutrophils) because I am so afraid of infections. I only travel in my own car, avoid crowds, public bathrooms, infected persons etcetera. I only eat boiled food and fruits that I have peeled myself. I prefer to meet my youngest grandchild, 6 yo, outside so he won't transmit some infection to me. In fact (knock on wood) I have not had any infections since Sept 2007.
Kind regards
Birgitta-A

[chris]

HI Birgitta

Thanks for that extra information. Whatever the reason it's clear that the thalidomide is having a good effect on you so long may it continue. I am also neutropenic (count is usually 0.6) and take the same sort of precautions as you. It must be so hard not to be able to hug your grandchildren in case of infection. For what it's worth I was quite scared (quite paranoid in fact!!!) at first about the risk of infection but a GP I met at an MDS Forum told me that the types of infection that are more likely with neutropenia are those that already exist in your own body but which can get out of control e.g. skin infections, mouth infections. The lymphocytes are not affected by MDS and can still function well against viruses etc. I had only 1 cold and a minor chest infection last year and nothing so far this year so feel quite relieved that the winter months are coming to an end!!! I do use quite a bit of antibacterial hand gel too and wear gloves if I am on public transport. I have given up flying, though, as I don't fancy all the recycled germs!!!

How low is your neutrophil count?

Best wishes

Chris

[Birgitta-A]

Hi Chris,
You know since I had neutropenic fever (almost sepsis) Sept 2007 after three infections - two in the throat and one intestinal - I give myself 2 Neupogen injections/week. Then my neutrophils are about 4.0.

When I started with Thalidomide they decreased to 0.6 and I got fever - I went directly to the hospital and got antibiotics iv. After 2 doses I was OK and could leave next day. When I had neutropenic fever 2007 they were 0.1 and I stayed at the hospital six days.

I hug my grandchildren but don't kiss them. They know that I am ill and that they can't see me when they are infected.

I wear gloves outside my home too except when I am eating.

You have a better immune system than I have - 0.6 is much too low for me. My high ferritin and Prednisone make me more sensitive to infections too.
Kind regards
Birgitta-A

[chris]

Hi Birgitta

It is strange how different people respond differently to different levels in their blood counts. Some people have much lower haemoglobin counts than others and yet are not as tired etc. I have been listening to quite a few of the webinars which Sophie has advertised on this Forum and they stress that we should not be so fixated on the counts - rather the clinical symptoms and the "wellness" of the person.

As you said, the prednisone must also account for increased vulnerability to infection and you would have to be extra careful with viruses such as chickenpox. Unfortunately, viruses etc can be transmitted before people even notice symptoms so it can be a bit nerve-wracking!! When I was first diagnosed with a low neutrophil count (it did go down to 0.4 at one point!) I did think that I would be getting ill all the time and am very thankful that I don't seem to be as I am not very good with illness!!!

I do hugs and no kissing, too! Feel like a film star (mwah mwah!!).

Take care

Chris

[Birgitta-A]

Hi Chris,
Yes, we are all different in many ways - when I got my dx I saw my GP because of breathlessness in steep hills and long staircases. Otherwise I felt fine. My HGB was 7.0. Since I started with transfusions May 2006 I have been asymptomatic except when I had neutropenic fever Sept 2007. I don't have spleen enlargement and constitutional symptoms like fatigue, weight loss, fever, bone pain and so on.

Now we have flu and some kind of intestinal infection with vomiting in Sweden. I have had the flu shot but older persons and persons with cancer don't develope so much antibodies so I am afraid of getting the flu. Soon these diseases have peaked and later in the spring we will only have the ordinary infections around us.

We can learn much from the net. You know I belong to 5 support groups and get much info from other members - I have seen many videos with Dr Mesa and other famous MF doctors.

Hope you feel OK!
Kind regards
Birgitta-A
72 yo, dx MF 2006, tx dependent from dx, Thalidomide since June 2010, Prednisone, Neupogen and Exjade. No transfusions since Sept 2010. HGB 12.2, platelets 112 (up from 22)

[Birgitta-A]

Hi,
Sorry! I mixed the support groups. My first dx was MF and I still belong to MF support groups. After I had neutropenic fever 2007 my WBCs decreased so I have to take Neupogen injections. A BMB showed MDS and I have seen many webinars about MDS.
Kind regards
Birgitta-A