Partners even more likely than survivors to experience fear and worry over long term, study finds
by runningmermaid on Sat Jun 02, 2012 01:25 AM
No worries at all - You were NOT being stupid at all- I figured there was more than one person who knew about PubMed.
I read the article you linked - interesting .. I still find it amazing that the clinicians are telling one another these things but not mentioning a peep to us (my apologies for typos this night)
Isn't it amazing when you read what they say to one another in writing but you don't hear in a doctor appointment? I understand that everyone is different and we all need and/or process information differently - but if a person specifically asks for facts, then we are prepared for facts. So give it to them if they ask ..
by CalDelaney on Sat Jun 02, 2012 02:38 AM
Hi Becca, John, Ruth and welcome AllGoodWays,
Thank you all for the interesting posts and links. For starters I’ve printed out the “Management of Myelofibrosis” article. I hope I can make some sense of it - a rusty 1971 background in biochem doesn’t get you much in 2012.
I just wanted to comment on what the nurse said to Becca about dropping blood counts. I really wish people would say nothing rather than saying silly things like that. My (former) hematologist made a similar remark when my platelets dropped back into the normal range. It was not, unfortunately, a sign that I was ‘getting better’. I also empathize with a remark made a few posts back about people thinking one isn’t sick because one doesn’t ‘look’ sick. I think most of us try to keep our morale and appearance up by remaining cheerful, taking care of our minds and bodies, eating well, getting fresh air and exercise and by having nice things to look forward to. I have lunch once a week with two former colleagues who are also seriously ill. Occasionally other former colleagues join us. They expect to find a grim, pale and morose bunch and seem surprised, even disappointed, to discover that we’re actually quite lively, cheerful and life-like. None of us ‘looks’ sick.
On your blood results, Becca, do you know what MID stands for? And does anyone know what the ‘normal’ range for granulocytes is? I apologize if that question was answered in a previous post. My results say ‘immature granulocytes 2.3’, is that the same thing?
I was diagnosed with myelofibrosis in October 2010 (after an initial wrong diagnosis of myelodysplastic syndrome or MDS with a 2 year prognosis in March 2010). Since Feb. 2011 I’ve been taking part in a clinical trial for the JAK2 inhibitor drug CYT387. It’s the only treatment, other than transfusions, I’ve ever had for my myelofibrosis. I don’t have the JAK2 mutation but oddly the drug seems to work for me. Impossible of course to say for sure, since there’s no control/placebo ‘me’ out there for comparison, but overall my blood results, though they go up and down, and sometimes by quite a lot from one appointment to the next, do not appear to have worsened in the past year. Yesterday my platelets were 133. The previous low was 137 in August 2011 but they were back up to 187 in April 2012 so there’s a certain amount of play in there. I am still transfusion dependent – 18 units so far - but require transfusions less often, once every 6 or 8 weeks instead of once every 4 weeks. My HGL was 87 yesterday. I get transfusions when it drops below 80.
Does anyone else get all kinds of little and big viral/bacterial infections? In the past two and a half years I’ve had cytomegalovirus (CMV), shingles, eye infections, multiple colds and other odd infections, and most recently, pneumonia (despite a vaccination). And I used to have a really good immune system. My WBC are still in the normal range but the individual types of WBC seem to be either too high (monocytes, basophils) or too low (lymphocytes).
From the posts it appears that although we have the same disease, it manifests itself differently and our treatments are different. I think we also live in different parts of the world. That makes comparisons quite tricky. Mine also started with high platelets but I was also told that doesn’t mean that I had ET that developed into MF.
Thank you to all. This forum is really helpful.
by runningmermaid on Sat Jun 02, 2012 05:16 AM
Her comment REALLY annoyed me since even 'I' knew better. John told me that they start worrying when the platelet counts drop because it does NOT mean things are suddenly under control .. it means your bone marrow is worn out . (If I mistated you John, please jump in and correct me - I did not read back to copy and paste applicable sections of your post.
From what I understand the MID results are "stray" cells that may show up in the count .. such as less frequently occurring and rare cells correlating to monocytes, eosinophils, basophils, blasts and other precursers.
I almost feel like I need to request a bone marrow biopsy from my doc to see what's going on with me at the cellular level so I can anticipate what to expect by late August this year (when I leave for Spain to hike the Camino de Santiago)
Cal, my counts seem to go up and down but when you look at the overall trend (when I compare against counts from the onc in Largo) - there is DEFINITELY a downward trend.
Cal - YES! I got a weird eye infection in 2004 (colds etc, I "treat" as described previously (with 1+ bottles of red wine this information istotally free of charge and is completely ONLY my experience - my friends have tried it, end up hung over and still sick as the proverbial dog the next day whereas, I'm perfectly fine and totally healed ;-)
by runningmermaid on Sat Jun 02, 2012 05:25 AM
I totally love this forum ... I truly appreciate everyone's candor when discussing where they are currently and have been recently with their condition ... it really, truly helps me and I find some confort in eliminating some of the 'unknowns' that my doctors would have me think.
I am accepting of the condition and the outcome .. I just want to know what to expect and approximately when. I've learned SO much from all of you than I've ever been told by any doctor. So I thank you sincerely for sharing and trusting such private information with us ...
by AllGoodWays on Sat Jun 02, 2012 07:47 AM
I'm Roger I managed to convince the Peterborough (UK) Hospital to employ a consultant dietician. I shamed the Mental Health Service to bring Patient Choice into the Mental Health Area. I was asked to help lobby Parliament (successfully) against a mental health bill. I have got the local health service insterested in providing an epilepsy specialist nurse.
The book from which I took this item about Interferon was approved by my GP and a local Superviser dietician. It is called the A-Z of Drug-Herb-Vitamin Interactions by Dr Richard Gaby of the Health Notes Team and it explains why certain side effects occur from drugs. I do not know if this is relevant to you, but it could be. It is an excellent book and has helped a number of others.
This is the complete article on Interferon.
Hope it is of some help,
by AllGoodWays on Sat Jun 02, 2012 07:57 AM
It seems I can't copy onto this site ...
I will try to summarise what it says: Of course, if it is relevent you would need the specialists approval and administering of this, but they may not know about it. My consultant didn't know about the ways of reducing side effects of chemotherapy outlines in this book (and didn't seem interested either!!)
"One study found that adding thymus humoral factor-gamma 2 to interferon therapy prevented decreases in white blood cell counts sometimes seen with interferon alone ..."
Most of the article is about hepatitis B so I don't suppose that is relevent at all.
by runningmermaid on Sat Jun 02, 2012 02:11 PM
Thank you for the book title, I shall see if I can locate it - sounds like interesting and potential information.
Thanks for sharing.
by AllGoodWays on Sat Jun 02, 2012 03:36 PM
Thanks for the welcome Cal. I am newly diagnised (April) and, apart froma bit of weariness now and again, and occasional discomfort in the spleen area feel mostly fine.
However, I am persuaded this state might not last so am doing all kinds of research - having done this kind of thing for a number of years now. Have you tried to find out what exactly is causing the various illnesses? That may sound an obvious question, and you might say a challenged immune system which would be fair. But the details can be significant. Medicines invariably strip one of certain nutrients, or can be balanced by taking other foods. This is a new drug and I haven't so far come up with any such specific knowledge. Nor, I suspect have the doctors. However I will look again and if I find some information e.g. from Dr Richard Gaby I will let you know.
JAK2 has to be similar to something, after all.
by AllGoodWays on Sat Jun 02, 2012 04:00 PM
I have just emailed Novartis in the UK and asked them for any more specific information about nutrient loss or any supporting substances they might know of. It does no harm to give them an idea even if they haven't yet got answers to this.
by runningmermaid on Sat Jun 02, 2012 05:20 PM
Hi Roger! It certainly doesn't hurt to write the manufacturer and request additional information - do let us know what/if you get anything
Coexistence of plasma cell dyscrasia with prefibrotic stage of primary myelofibrosis: a case report.
In Vitro Megakaryocyte Differentiation and Proplatelet Formation in Ph-Negative Classical Myeloproliferative Neoplasms: Distinct Patterns in the Different Clinical Phenotypes
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