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  jeffbaeten | published about 10 hours ago | Originally written in English waldenstrom

  i'm a 61 years old Waldenstrompatient from Belgium, i has been for 6 mouths under chemo, my uncologe Nathalie Van Heddeghem at the Academisch Ziekenhuis in geraardsbergen
  oost-Vlaanderen Belgium follo
  wt the methode off the Majoclinique whith Mabtera
  My situation before: igM value was 2800
  now today 171 !!
  i haved a Panzytopenie, now today my blood have normal vallue
  i have my last chemo the 7th , 8 and 9 off may and still feeling better
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  calegarigiuseppe | published about 10 hours ago | Originally written in Italian Six years with MGUS-IgMK

  I am 67 years old. In 2006, following a routine check-up, my gamma globulins percentage was 19.4, which was over the maximum of the reference values. At my following check-up the value increased so I consulted a haematologist who diagnosed a MGUS-IgMK and prescribed a blood test every six months and an abdominal ultrasound once a year. In May 2011 I underwent a bone marrow examination and received a definite diagnosis of Waldenstrom's disease. The haematologist suggested keeping the values under control with blood tests. The gamma globulins' value is progressively increasing (May 2012 value 30.7%). My body reacts normally, I have no symptoms of the disease or of fatigue and I wonder how long it will last and what the degenerative symptoms caused by this alteration of the immune system will be. Giuseppe Calegari
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  marcdungernsternberg | published 1 day ago | Originally written in French newcomer

  Hello everybody, I hope I can find there the information I've been searching since 2009 because like many patients, doctors haven't told me much and all I know about MW I found it on the web

  Notice: This text content has been translated automatically by a third-party service.
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  giusi | published 26 days ago | Originally written in Italian Herpes zoster/Shingles

  I would like to hear your opinion on a recurring problem I have been suffering from recently...I have had to undergo several cycles for treating herpes zoster on one of my arms...it is as if my system cannot overcome infections...in addition my electrophoresis just changes suddenly, even each 15 days, going up and down...however my degree of anaemia is not that bad...could anybody give me some adivce? Thanks

  Notice: This text content has been translated automatically by a third-party service.

  3 replies to the topic — see all replies

  • 
    pmanning published 25 days ago | Originally written in English

    Hello again Giusi
    I am sorry to hear of the trouble you are experiencing with herpes zoster, which is a notable risk for Waldenstrom patients, either as a result of the disease itself or of treatment compromising the immune system. Antiviral medication treatment is often given alongside chemotherapy in order to prevent herpes outbreaks, and I have had to take aciclovir for two separate periods during the last 18 months for this reason and so far I have not experienced an attack. As what you are going through may not be unusual, your question has been shared with the talk forum for WM patients in the UK to see if anyone has a similar experience to yours and can share some of their findings.
    If I receive any such information I will share it here or people may just post it here directly for you to have translated. Best wishes,
    Phil
    --
    Phil Manning - English-language moderator
  • 
    giusi published 21 days ago | Originally written in Italian

    Thank you Phil, that was really nice of you .... I will tell the doctors in the cancer ward when I go to Milan for the checks

    Notice: This text content has been translated automatically by a third-party service.
  • 
    pmanning published 19 days ago | Originally written in English

    I wish you all the best, Giusi – do let us know how you get on.
    No one has come back to me yet with information about their experience of shingles, but I will let you know if they do.
    Kind regards - Phil
• 
  pmanning | Conferences | published 2 months ago | Originally written in English 3rd International WM Patient Forum - latest news

  Hello all

  WMUK is a charitable partnership between people WM patients, carers, specialist doctors and nurses. It aims to bring them closer together and to lobby for the latest and best treatments. Although UK based, it also welcomes Irish patients, carers and doctors.

  WMUK hosted the 3rd International Patient Forum at the Royal Society of Medicine on 11 March, when a record number of over 220 attended, mainly from the UK but with an encouraging number of attendees from mainland Europe and wider afield. Feedback is still coming in, but WMUK reports that all so far has been outstandingly positive.

  At present 60Gb of video shot at the Forum requires editing to compress it to DVD, hopefully available by April at a price £12-00. If interested please send WMUK an email at info@wmuk.org.uk

  WMUK will also put all of the Powerpoint presentations on its site in due course, but Dr Steve Treon's keynote presentation slides are already available to download here:
  www.wmuk.org.uk/downloads.php

  Best wishes,

  Phil
  English language moderator
• 
  flinco | Start of Therapy | published 2 months ago | Originally written in Italian start of therapy

  Beginning of therapy

  Chemo
  27/2 antinausea + bendamustine
  28/2 antinausea + bendamustine
  I reacted pretty well, I got a little sick, only the first 2/3 days but it was bearable, nothing serious.
  Anticlonale
  05/03 I took the Rituxan. I started at 09.30. Aspirin + a dose of 100ml with infusion rate of 100, all went well. A higher dose infusion of 140 went well, after the first ½ hour they increased the infusion to 180 at this point I started to feel cold and then I also got the chills, tremor and a 39.30 fever. Paracetamol + cortisone and the fever didn't pass. After 15 minutes again paracetamol + cortisone my fever dropped to 37.4 and they started the infusion of rituximab at an infusion rate first at 90 and then 135. We finished 7.00 pm approx.
  I could no longer stay in that bed.
  During the following days all went well but the past couple of days I got some rashes on my lips and tongue that sting.
  For the outbursts am using a Teatree balm while for my tongue I'm trying with a propolis spray.
  One reply to the topic — see all replies

  • 
    pmanning published 2 months ago | Originally written in English

    Hi
    Thanks so much for keeping us up to date. Sorry it has taken some time to reply, but I have been waiting for a translation of your post. I understand from the site administrators that if you make your future posts in the Italian area of the site (rather than the English area), a translation will be easier for me to obtain.
    It sounds like you had a very trying day on 5 March - sorry to hear about that! We can react very differently to rituximab. In my case, I had no extreme reactions and just had a slight rash after the end of all treatments that lasted for a few days.
    Very best wishes to you as you continue with treatment.
    Phil
    --
    English language moderator
• 
  sandyheveyferrante | Vitamin B17 | published 2 months ago | Originally written in English Holistics

  Is there anyone else in this community that has tried or uses B17?
  One reply to the topic — see all replies

  • 
    pmanning published 2 months ago | Originally written in English

    Hello and welcome to this forum
    Your question is an interesting one, but it is important to emphasise that the members of this forum are patients or carers (as is the case for the other disease communities set up on this site) and that we are not qualified to give medical advice. For medical advice we must rely on our doctors first and foremost. There are also advice and resources available (online and in English) from Macmillan Cancer Support (UK-based) and The American Cancer Society, as well as, of course, the International Waldenstrom Macroglobulinemia Foundation: www.iwmf.com/
    B17 (that is, Vitamin B17), also known as Laetrile or Amygdalin, is a compound found in bitter almonds and in peach and apricot kernels and it contains cyanide. One theory claimed for its effectiveness is that cyanide kills cancer cells while leaving normal cells unharmed, but this is not supported by scientific evidence and indeed there have been instances of fatal cyanide poisoning from the use of this agent. Its sale is banned by The European Commission and by the American FDA (Food and Drugs Administration) and in consequence there is no way of knowing whether the material one buys is uncontaminated by other agents which may cause additional problems.
    The recommendation from this site will be the same as Macmillan's, which is that anyone thinking of taking B17 should consult their cancer specialist.
    If you wish to see Macmillan's advice on B17 and other alternative treatments, you will find it here:
    www.macmillan.org.uk/Cancerinformation/Can...
    The American Cancer Society also has an article here:
    www.cancer.org/Treatment/TreatmentsandSide...
    WM, like any cancer, is a complex and rare condition, with a number of different symptoms and possible complications and its treatment should always be handled by specialists. Its diagnosis depends on accurate testing (bone marrow biopsy is required in all cases) and its treatment should be tailored to the individual patient. We are fortunate that many more treatments are now available than when the disease was first identified and new ones are being researched and developed.
    I hope this response is helpful. If you would like to, do share why you raised the question.
    Wishing you good health,
    Phil
    --
    English language moderator