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I have been followed as a patient for two years at the San Raffaele in Milan. I would like to know clearly why in Italy our pathology that is known as "blood cancer" abroad is not recognised as a rare disease in Italy? if the Italian state would consider those who suffer from waldenstrom's as being patients with a rare disease, we would have more security at a national medical level...
can anyone give me an answer to this?
Thank you for your interesting post, although this is a difficult question for someone in England to answer, as I have no knowledge of the health system in Italy. However I can at this stage make some general points:
1. Speak to your doctors about the matter and see what is being done in Italy to have the disease recognised and to ensure that patients in Italy can have access to the best possible modern treatments
2. Try and make contact with other patients in Italy so that you can perhaps set up a patient support organisation to campaign for your interests as a group
3. Contact and join the International Waldenstrom Macroglobulinemia Foundation (www.iwmf.com/) as this will give you regular access to the latest information and many other benefits. Ask the IWMF if they can advise you of who is most expert in Italy about this disease.
I hope these thoughts are helpful. To make progress in research and treatment it is essential that patients are as active as possible in seeking for and sharing information. The WM community is very active and informed and that is a good thing!
Do come back here to let us know how you are getting on and if there are matters that you think it would be helpful to share in this space.
Phil Manning, English language moderator
the goal of the Europlan project is to develop a national plan for rare diseases for all European countries within 2013. To date, Italy is not the only country that still needs to do a lot!
You can follow the activities and progress of the project on the web site: www.iss.it//cnmr, the network of the National Center for Rare Diseases. You can also consult the network of the Italian Federation for Rare Diseases: uniamo.org.
There are competent professionals in Italy on our disease that certainly do their best to help when a treatment is needed.
There is not yet any patient organization for Waldenström's disease. But there is the AMS, the Association of Blood Diseases, which promotes research and progress in the treatment of leukemia and other blood diseases. Info: www.ams-onlus.org
I wish you hope, courage and strength.
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Just a brief history. I live in Saskatchewan, Canada. I'm 66 and retired..and except for a bout of colon cancer 16 months ago (completely clear now) I've had a relatively disease free life. Aprox 30 years ago I was diagnosed with chronic lymphatic leukemia. I was advised at that time that I would eventually need chemo. Then I just forgot about it. About 4 months ago I had a lymph gland swell on my neck - and then another and another......etc. At the same time my spleen started to swell. My GP sent me off to an Oncologist who put me on "watch and wait". My symptoms continued to slowly get worse and my CBC hit 85,000. The swellings and CBC prompted the specialist to recommend chemo. I started R-CVP 16 days ago and my visit to the Doc today.was quite positive. The neck glands had shrunk 90% by day 8 and my spleen has gone from '4 fingers' below my ribs to '3 fingers' below. The referred pain in my shoulder from my spleen is just gone. I'd had 2 bone marrows just prior to the chemo and today the Doc advises that it's NOT CLL but, instead, WM.
This is my first attempt at locating any 'in depth' info on WM......there's just not a whole lot out there that I've found so far. I'll keep looking.
So far, I've had no notable complications from the chemo and actually feel quite normal...except for a bit of reflux and heartburn. I just assumed that the reflux/heartburn was a continuation of a pre-existing condition...but the DOC decided (at my gentle insistance) to test for H.Pylori. If that proves to be positive then it will be quickly treated.
Off for my 2nd chemo session on the 10th and then evaluate that to determine what course of continued treatments I should receive.
It's quite nice to find a site that can provide a bit of information and I want to thank all that have contributed. I must say...I'm not really concerned (I spent all that when I thought it was CLL) so I'm just in a curious research stage right now...otherwise, I really don't think much about it. It is what it is and any worrying about it is wasted mental health. Of course, that's just my take on it...but it seems to be working.
It is good to read your posting. I am the English-langauage moderator for this forum (and am based in England).
Undoubtedly you will have worked through a lot of the anxiety that normally attends a diagnosis of WM in all the time that you have been living with the possibility of CLL (I am not medically qualified, but I have seen it frequently stated that WM and CLL are related).
As regards heartburn/reflux, I would just mention that I have been prescribed either proton pump inhibitors (e.g. omeprazole, lansoprazole) or ranitidine (Zantac) during the two chemo regimes that I have undergone in the last year in order to address the problem. Again, I am not medically qualified, but, if it were me, I would be inclined to ask my doctors for suitable medication whether or not H.Pylori were present. I believe such drugs are prescribed prophylactically as a matter of course for patients in the UK, particularly if they are receiving prednisolone (prednisone).
As regards resources, I would strongly echo Rob's recommendation of the IWMF, which is the lead organisation for this strange and rare disease. I have just checked and they have two contacts in Alberta, which I think would be the nearest to you of their various Canadian contacts (although I appreciate you deal with much larger distances in Canada than we do in the UK!).
Macmillan Cancer Support in the UK is also an excellent source of information for English speakers, always of course bearing in mind that there may be significant differences in medical practice between our respective countries:
All the very best with your treatment and do let us know how you get on.
Phil Manning, UK
Hi folks - I appreciate your quick replys and suggestions of sources of information.
Phil - you are quite correct about the Ranitinine.....this was (and is) a portion of the drugs given for my first chemo session....I believe this is done as a matter of course to prevent heartburn caused by the chemo drugs...not to address a pre-existing H.Pylori infection...but, happily, it handles both issues quite nicely.
I shall certainly contact the Alberta contacts generously provided and continue my search for information...as well as providing timely reports on this little journey.
Many thanks - Angus
Hello everybody: my name is Pedro Mingo Pérez, I am 52 years old, I am married and I have five children. I have always been a healthy man till I was 50 years old, when one day I started feeling bad. After several studies, WM was diagnosed, associated to a CIDP, my IGM index was 2500, I started 6 cycles of combined chemotherapy, after they finished, my IGM index was 2000.
I have not suffered from several side effects, only the normal ones produced by cortisone. The only severe effect is Nerophathy which is in a moderate state.
Now a specialized physiotheratist, with knowledge of Sports Medicine, is treating me and apart from the exercises that she indicates, mainly stretching, I have started to walk, after two years of not being able to do so. I have suffered from terrible pains in my legs and hands, till my medication was adjusted, now I am taking Tramadol, Gabapentina, Cymbalta, medicine againt inflamation, all of them together with others for controlling Hypertension, Diabetes Melitus II and Hiperuricemia.
Now, I am not taking cortisone, I have to go for an exam next January. I have got much better as regards to mobility and I have recovered my abductors, Plantaris and Tibials, muscles, and though I occasionally suffer from pains, my life has started to change, and now I see life from an objective point of view. I have reflected a lot on my future, and I have reached the conclusion that I must continue fighting for me and, mainly for my family. I am not afraid of dying, it is only that sometimes this has made me think of committing suicide.
Many soldiers are in this battle, and though sometimes it seems that our common enemy is winning, our unity will make us all together win the war.
This letter is aimed to cheering up all those affected, and to give them the wish to continue fighting, also to wish them a Merry Christmas, a warm hug to all of you.
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Thank you so much for your message and it is good to know that the treatment you have received and are receiving has produced good results.
You are right to say that many people are involved in the fight against WM and I believe too that we will win the war. Perhaps the most encouraging piece of news the WM community has received recently is that the genome of WM has been sequenced and that a crucial pathway has been identified as a target for new treatments. You can read the announcement (in English) here:www.dana-farber.org/Newsroom/News-Releases...
Although circumstances may seem dark from time to time we must all remember that we are here to support one another and it is great that this is happening across national boundaries as well as within countries.
Best wishes for a health new year!
Phil Manning (English language moderator)
pmanning | published 2 months ago | Originally written in English Possible vaccine for WM in development
While one must always treat information about possible new treatments with caution, especially in the early stages, I thought you might be interested in the following, recently announced in the USA. Here are some quotes from a press release:
"27 Oct 2011: Biovest ... today announced that the FDA has granted Orphan Drug Designation to BiovaxID® for the treatment of ... WM. This milestone advances Biovests plans to develop ... BiovaxID as an autologous active immunotherapy (personalized cancer vaccine) ....
We believe WM is an ideal indication for BiovaxID to potentially provide significant clinical benefit for patients by extending remissions and potentially delaying and/or avoiding alternative treatment options such as stem cell transplant or removing the patients spleen. Our study data to date suggests that BiovaxID-treated patients who express a certain type of protein isotype called IgM on their lymphoma cells are much more likely to remain cancer-free longer after achieving a remission following induction therapy. Since most WM patients express this IgM isotype, we look forward to conducting future clinical trials to evaluate our vaccines utility in treating this rare B-cell blood cancer."
this is the full press release:
and this is another report about it (written before WM was added to the lymphomas included):
You may also be interested to se the following:
"Biovests vaccine has been granted seven years of U.S. market exclusivity for WM. The exclusivity will start after Biovest receives regulatory approval from the U.S. FDA. The company said it expects to file its application for the approval next year."
they also say: "Biovest is preparing for meetings with U.S. and international regulatory agencies to discuss the next steps required for potential approval of our personalized cancer vaccine, BiovaxID(R). Biovest has completed two Phase II clinical trials and a controlled, randomized Phase III clinical trial of BiovaxID."
It seems a course of 5 doses over a 6 month period is envisaged. Treatment is likely to be very expensive, but it might still be cheaper than, or comparable with, repeated chemo.
It has to be said that it is very early days in the development of this possible treatment. Even assuming it passes the necessary clinical trials and jumps the various regulatory hurdles in the USA, it is likely to be some considerable time before any such therapy is available in Europe. Nevertheless, this seems a very exciting development in the search for targeted treatment with a minimum of side effects.
Phil Manning, Moderator