Talk:Primary myelofibrosis

wanted: average age of getting disease and other epidemiological info

see above the line. —The preceding unsigned comment was added by 207.151.229.121 (talk) 20:52, 22 February 2007 (UTC).

Merge

Please see the merge proposal at Myleofibrosis. WhatamIdoing (talk) 01:42, 14 December 2007 (UTC)

Question...

Anyone know why its called "Assmann's Disease"? —Preceding unsigned comment added by 134.29.155.131 (talk) 17:40, 9 April 2008 (UTC)

Here's info on the author's who first wrote about MF/CIMF/AMM/MMM (whatever they call it) Heuck & Assmann http://www.whonamedit.com/synd.cfm/2799.html Alan

I also believe that Hot Flashes are a symptom, or atleast my Mom had them, should that be added to symptoms? (Tennisgrl1874 (talk) 14:34, 7 November 2009 (UTC))

Weasel words

What does "Treatment is often challenging" mean? Does that mean "treatment has a lot of side effects" or "it's difficult to figure out which of a dozen potentially helpful treatments to try first"? Or is a euphemism for "treatment is pretty much ineffective"? WhatamIdoing (talk) 05:34, 17 June 2008 (UTC)

I know when I was first diagnosed, they only wanted to give me palliative care. I'm 43 years old with a 3 year old, I'm not about to sit back and just let it happen. I've been through 3 trials so far, and I've not had much luck. I don't want to have a transplant because of the risks (about a 20% fatality rate and then that wonderful graft vs. host disease), but it may come down to that. There really isn't a whole lot other than stem cell transplant they can do for us. The JAK2 inhibitors don't seem to be curative. Alan —Preceding unsigned comment added by 67.198.82.134 (talk) 06:46, 4 August 2008 (UTC)

After years of treatment, I am finding the statement "Treatment is often challenging" to mean that the palliative care referenced above by Alan is highly individualized and unstable - the patient must take a drug for a month, monitor liver/blood counts, change dosage or try yet another medicine, repeat multiple times. The non-medicated route of blood transfusions, while immediately helpful, can cause liver damage due to iron toxins. If frequent transfusions are needed (say, every week or two) and are done without monitoring the patient's ferretin levels, this can result in the need for chelation therapy; one version of which, ironically, is to remove blood from the patient. In other words, there is no magic pill for all patients; treatment is based upon the individual patient, and tends to require a lot of tweaking. Since 50% of us do not carry the JAK2 gene, even if the inhibitors did work, only half of the patients would benefit. Pmf patient (talk) 23:23, 9 December 2008 (UTC)

Help with understanding this

My father in law was just diag. with this what should we suspect? Starting him on a 28 day supply of pills and a blood count every two weeks. Than a week off and back on the pills. He is 76 years old and has lost a lot of weight will he gain the weight back? —Preceding unsigned comment added by 75.42.210.10 (talk) 20:14, 17 November 2008 (UTC)

I'm sorry, this is not a chat board, and we can't really help you. This is the talk page for discussing improvements to the Myelofibrosis article. I'm sure that if you did an internet search on myelofibrosis online support group that you'd find several options. WhatamIdoing (talk) 19:20, 19 November 2008 (UTC)

myelofibrosis

My mother -82 years old - is suffering from myelofibrosis since about seven years back in time. Before that she suffered from polycythemia vera. My question is: 1)Does the general medication cause incontinence and muscles unfit for use? 2) Is there anything at all to make her last years worth living? Very grateful for an answer Vetgirig (talk) 20:24, 21 January 2009 (UTC)

I'm sorry, this is not a chat board, and we can't really help you. This is the talk page for discussing improvements to the Myelofibrosis article. I'm sure that if you did an internet search on myelofibrosis online support group that you'd find people to chat with you. WhatamIdoing (talk) 00:46, 22 January 2009 (UTC)

I don't know about a causal link to CMV or other viral diseases. There are some clusters tied to environmental issues (like benzene, gasoline, smoking etc.). I know I have had a couple of bouts with Shingles but that is probably because of the immune suppression from the chemo drugs (mainly while on Incyte). Some people have tried to tie this to autoimmune disorders, but the connection is week. Alan —Preceding unsigned comment added by Saalanc (talk • contribs) 06:52, 3 June 2009 (UTC)

myelofibrosis connection to other splenomegaly?

is there any connection with having been diagnosed with CMV (cytomegaloviral disease) and developing myelofibrosis later on? —Preceding unsigned comment added by 208.104.250.166 (talk) 13:06, 24 April 2009 (UTC)

I could see the connection the other way around... myelofibrosis weakens the immune system and the CMV takes hold. The trigger for MF is at the genetic level, so unless someone can prove to me that CMV invades the cellular process that causes MF, I would have to say there isn't a connection. The CMV can arise from the treatment for MF too. Just a thought. Alan —Preceding unsigned comment added by Saalanc (talk • contribs) 03:33, 23 July 2009 (UTC)

Myelofibrosis

I was surprised to read about the Shingles, i have suffered from them as well, but hadn't put the disease to it and my immune system been so low I haven't had any form of Chemo or medication as yet, as i only got diagnosed back in January of this year, but prior to that i had ET My situation is a wait and watch one at the moment. I'm not bad enough for any trials, but as i told my specialist i don't want to wait until I'm in desperate need of been treated either.....I'm 42 with 5 children snd i'm not looking forward to the process ahead —Preceding unsigned comment added by 58.104.33.182 (talk) 02:53, 1 July 2009 (UTC)

You certainly don't have to be on chemo to get shingles. Lots of "normal" (not that we're not normal because of MPD's) folks get it from being under emotional stress and the impact on the immune system. Just having ET is stressful enough and could serve to trigger it. I headed off my last bout of it by taking 1000mg of L-Lysine BID right at the start.

http://en.wikipedia.org/wiki/Herpes_zoster

--Saalanc (talk) 04:33, 12 June 2010 (UTC)

Further Treatment Options

Would it be appropriate to add some information about the success they're having with the JAK2 inhibitors currently in clinical trials? Saalanc (talk) 06:05, 21 March 2010 (UTC)

I'm starting a new trial for MF next week at MD Anderson using a heat shock protein inhibitor. If your interested about how it's going, drop me a note. --Saalanc (talk) 04:33, 12 June 2010 (UTC)

I think it would be appropriate to discuss JAK2 inhibitors, as well as the best understanding of the mechanism. Also, that the JAK2 inhibitors have so far shown mostly a reduction in spleen size, not improvement of RBC counts. Adam July 2010 —Preceding unsigned comment added by 67.81.106.41 (talk) 17:32, 24 July 2010 (UTC)

I finished the HSP90 inhibitor trial and didn't have any significant results. My blasts rose from 1 to 3%, but it could be the progression of the disease. Right now, other than Incyte INCB018424, the docs are saying there isn't anything that promising on the horizon. Some other JAK2 inhibitors, but they seem to have a short-life of effectiveness so far (mine worked for about 9 months, other folks are saying up to 2 years).Saalanc (talk) 09:15, 24 October 2010 (UTC)

British Guideline

doi:10.1111/j.1365-2141.2012.09179.x JFW | T@lk 22:46, 25 July 2012 (UTC)

Merge

Hello to all! I am proposing a merge from the following articles into this article:

• Cutaneous Myelofibrosis

This is for the following reasons:

• This articles are very short in length (1-2 sentences) and have not been edited significantly in 3-4 years.
• This knowledge shouldn't be obscured from readers of this article by virtue of being isolated in an obscure article of 1-2 lines.
• This topics may receive more attention by being mentioned in the main article.
• The articles, if needs be, could be re-expanded at a later date.

Kind Regards, LT90001 (talk) 13:17, 9 August 2013 (UTC)

In the absence of any objections, I have merged the one line of the cutaneous myelofibrosis article.

pmf=entity!

igotit,so(pv,et=related,butdifrntD/+othrcauses>apls2lemons:((81.11.206.159 (talk) 20:16, 14 October 2016 (UTC)

splenomegaly reference

I don't feel I have the background to make this edit myself, but surely the phrase " Enlargement of the spleen is called splenomegaly, which also contributes to causing pancytopenia, particularly thrombocytopenia and anemia" is misleading. Splenomegaly or hepatomegaly are the body's response to the bone marrow being unable to produce enough blood cells, not a cause of the pancytopenia.. — Preceding unsigned comment added by Doug Gillett (talk • contribs) 08:36, 19 September 2018 (UTC)