MDS without dysplasia

[Helen Robinson]

Hello Chirley

A few comments. from my understanding anaemia in MDS is caused by too many immature red cells which do not deveop and provide the haemoglobin you need. You do not need to have a chromosome abnormality.

About the iron overload. I thought they measured this via the ferritin in a normal CBC not a BMB. Ask what your level is and think about chelation (the new oral chelator Exjade os on the PBS). Once the iron is high it is hard to reduce while you are continually having transfusions.

My husbands GP says that just because you have a rare problem it does not mean that you cannot have normal things such as arthritis. The first thing would be to try panadol and have faith in your physio. Mine is wonderful and the acupuncture can be a magic cure.

I am glad you are feeling better now. Keep smiling

Helen

[Murphy]

Hi Chirley,

I too have been told that no one knows what the exact cause of my AA is and that used to bug me. I used to feel that I must know the cause so I can fix it and become good again, which might have something to do with the fear of rejection by not able to be perfect. Nowadays I appreciate their honesty and can kind of relate to the need for being brutally honest at some circumstances. I think science will always be science. The grey areas are probably where the profession yet to discover and work on.

I feel for you that some of your families and yourself are troubled by auto immune diseases and hodgkins lymphoma. I was off Cyclosporin a month ago, my platelets had dropped but everything else seems fine. Can't wait to go overseas to Tasmania

Murph

[Chirley]

Hi, I thought I would take this opportunity to wish everyone Seasons Greetings. Good luck and better health in 2008. Bye Chirley

[Chirley]

Hello, I just wanted to know if any one has any information about portocaths. I was thinking of asking my doctor if I could have one inserted but I met a woman last week who told me that hers was very painful. She said that it was painful all the time and was agony when they tried to access it. I don't know whether to believe her because she was complaining a lot about everything and everything seemed such a drama. I know that people in this forum have mentioned having ports inserted and pain didn't seem to be an issue. Thank you. Chirley

[Birgitta-A]

Hi Chirley,
One year ago I had a port inserted. My platelets were low and dysfunctional so I took Cyclokapron 1 g x 3 for 5 days before the operation. Then I got 1 unit of platelets. I was bleeding much and the dr who made the operation asked if I had been taking painkillers!

My port is placed very high due to bleeding in the underlying tissues but that is only good - I have seen other patients with ports very deep in the tissues and the nurses have difficulties to use the ports.

The port was painful the first two weeks. After that I have not felt it at all and it is fuctioning very well .
Kind regards
Birgitta
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days with RBC transfusion every 6th week, Neupogen 2 injections/week, asymptomatic

[Chirley]

Hello, my Hb last Thursday was 69 and I can't have a transfusion until next Thursday,due to work commitments, when I expect my Hb to have dropped to about 60ish. I do get very tired and short of breath and carry anginine with me just in case I get angina, but one of the things that bugs me the most is a persistent itch and restless legs. It only kicks in when I get really anaemic and tired in any case, and with this itch I can't sleep much at all. Is this a common thing and does any one have a solution ? I can't take phenergan because it just increases the tiredness. Thanks. Chirley

[Chirley]

Hi, I've just come out of hospital from my last transfusion. While I was in there my Dr said that he would like to do some more definitive tests because he thought that ultimately I will need a bone marrow transplant. I must admit it isn't something I have even considered. Could any one who has had a bmt PLEASE let me know what their experience was like. I don't think I want it but if or when I'm presented with the choice of transplant or death I don't know what my decision would be. I hope I have a long time to procrastinate about it. Also am getting a portacath inserted in 2 weeks time, best part will be no more bruised arms. Hope to hear from you soon. Chirley

[Chirley]

Hi, I was just wondering if any one else has tested positive homozygous for MTHFR gene mutation. I have just had my portacath inserted and the vascular surgeon who inserted it mumbled something about it being interesting that I had that gene mutation and bone marrow failure. I felt that he was making some connection between the two. I have never seen any articles that associate the gene mutation with bone marrow problems. It would be interesting to know if there is an increased incidence of MTHFR mutations in bone marrow disease. Chirley

[Chirley]

Hi, I'm excited. I had my portacath accessed for the first time. I was apprehensive, especially when the nurse asked if she could do it for the first time under supervision from the nurse educator. Thank goodness, totally painless. It's really good to have your arms free and be able to do everything as normal. Another bonus, my Hb didn't drop as much as usual. I know this is premature but it is a little bit of hope that the transfusions might be less frequent. My white cell count was still a bit low but not too bad. One thing that I noticed over the last few hospital admissions is that I get a slight temperature (37.6-37.8) every evening. It isn't high enough to be of any concern, it's just makes me wonder why it happens. My holidays are almost over, back to work on Monday, it's going to be hard to get out of bed at 4.30am again, battle the traffic for 2 hours a day and stay out of the office politics. Oh well, someone has to do it I suppose. Bye Chirley

[Zoe's Life]

Chirley,

How wonderful. Glad things are going well. Will it be good to get back to work, in spite of the traffic and politics?

Zoe

[Chirley]

Hi Zoe, I don't mind going to work too much but I've been doing it for so long that it has lost all it's challenge. I can do it without even thinking about it. It is mind numbingly boring and the worst part is that I work with people (average age of 10, ha ha) who think it's challenging and exciting. They talk about it even when we're on lunch breaks etc. I find it very difficult to pretend any interest in the job and yet everyone else seems to talk about it like it's rocket science or something. It can be physically challenging sometimes when I'm not feeling well and I wish I could do something that would stimulate me mentally, but I'm a bit too old to retrain for anything else and am just hanging in there for the retirement benefits. I notice that you're from Logan too, only half a world away...... Chirley

[Chirley]

Hi, I've just come back from my GP. I asked him why I would be getting fevers in the evening when I don't have any obvious signs of infection. He said it's an indicator for leukaemia. My blood tests this time were really good and certainly don't show any reason to suspect leukaemia. Hb 86, haematocrit 2.9, RCC 3.4, WCC 2.9, neuts 1.6 (great!!), lymphocytes .5 everything else in normal range. My question is does anyone else get these evening temperature rises ? I think I'm just after some reassurance that it isn't pointing to an escalation of my disease. Also the GP said that they want to keep my Hb above 80 because chronic low Hb can cause heart failure very quickly. Has anyone else developed heart failure from anaemia ? I know I got heart failure when I had pnuemonia but it recovered completely when my pnuemonia was treated. Also have been getting mouth ulcers, anyone got any quick fixes for them ? Thanks Chirley

[Birgitta-A]

Hi Chirley,
Joan asked the same question concerning her husband Jan 2008 and then I wrote:
"Fever during the night can depend on that the so called cytokines are more active when we sleep. Cancer cells can spontaneously produce cytokines, small proteins with multiple biological properties. Some cytokines released by cancer cells are "pyrogenic", they produce fever directly by their action on the hypothalamus, which is involved in regulating body temperature. Then the fever isn´t a reason to worry.

If your husband has an infection you should worry. I understand that his WBC:s including the neutrophils are OK and then this info from a MDS-site perhaps isn´t relevant.

“For aplastic anemia, myelodysplastic syndromes and PNH patients, there is no absolute number at which an elevated temperature becomes critical. The most important issues are:
what is your absolute neutrophil count?
what is your absolute lymphocyte count?
do you have a central line or some other "foreign body" in you?
are you having symptoms (chills, low blood pressure, sweating, rapid breathing)?
do you have a source for infection on your physical examination?

Persistent fever should be considered to be an indication of infection until proven otherwise. Indwelling cathers can often be a source of asymptomatic infection. A diligent search for infection should be undertaken. Occasionally fevers can be associated with disease progression to acute leukemia. Fever can also follow transfusions.”

Kind regards
Birgitta-A
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days after transfusion every 6th week, Neupogen 2 injections/week, asymptomatic