MDS newly diagnosed

[quilt_swim]

Hi my name is Nonie from Australia.

I have been recently diagnosed with MDS -RCMD. For a few years my platelets have been down and now sit at 105. Neutropils vary between 0.6 and 1.2 and have been bopping around since 2008. I recently underwent a bone marrow biopsy and this is when I got my diagnosis. I have no symptoms at all but was very surprised by diagnosis and all my info has come from internet and some of this bothers me. The Leukemia Foundation here in Aust. put me onto this forum so here I am. I guess I just wonder where I am heading as I dont know anyone with this here. David seems to have similar symptons. I have just had my 70th birthday but I am very active swimming 3/4 times a week and doing lots of other exercise (I have had 3 hip replacements on the one hip so I exercise to keep it in good order). Soon after my diagnosis some friends suggested my husband and I join them on a trip to South america so we are off there at the end of May for 3 weeks. I rang the doctor and he said go for it but you need to sort out travel insurance. I managed to get that - at a premium but who cares - and I am off in 3 weeks. I feel quite okay with my aches and pains coming from an arthritic knee and bakers cyst which will need replacing one day. I do wonderr what my future holds with this blood problem. The specialist doctor told me to have regular blood tests and come back and see him in a year's time so I guess he is not that worried. I just did not know what I had when I saw him and now I have lots of questions I should have asked him.

[chris]

Dear Nonie

Welcome to this Forum! We also have somebody posting from New Zealand so very much getting an international flavour. Your experience mirrors many (most?) of ours with regard to lack of information at diagnosis and looking up on the Internet can be a bit scary. You seem to be pretty fit and well considering your arthritis issues so I'm guessing you have no problems with your haemoglobin/ red cells which brings about a lot of fatigue symptoms? If this is your first bone marrow biopsy and you have had low platelets and neutrophils for a while, chances are that you had MDS for some years before this official diagnosis. Good thing is that it sounds as though it is quite stable and as your haematologist is content with regular monitoring (what is called "watch and wait" or "active monitoring" here in the UK, then that all sounds encouraging. If you have not been told about your chromosome results, that could be something to ask about as it gives an indication of the severity of your MDS.

Might it be worth discussing your knee situation with your speicalist with a view to having any operation sooner rather than later in case the platelets drop further to a level at which an op will not be possible?

There is an excellent book called "MDS:100 Questions and Answers" which you shold be able to obtain in Australia? There are also Centres of Excellence for MDS in Australia. I think you can find them on this site. If not, I am sure that Sophie Wintrich will be able to help you as she is a mine of information. Contact details are on the site.

Best wishes


Chris

Yes, travel insurance can be a bit of a headache - very irritating if you are in the lucky position of not needing any treatment for one's MDS and probably a bit of a money-spinner for some of these companies!! Hope you have a terrific holiday.

[quilt_swim]

Thanks for your reply Chris. My doctor's letter includes the following -

Bone marrow biopsy confirmed a degree of trilineage dysplasia. B12 and folate levels are normal at 359pmol/L and 26.4nmol/L respectively with a normal reticulocyte count of 71x10(9)/L but there is a degree of dyserythropoisis with some megaloblastoid changes, hypogranular neutrophils and hyper lobulated megakaryocytes in the marrow. The blast count is low consistent with more favourable long term outcome in terms of absence of progression. The karyotype is normal with no obvious cytogenetic changes and overall I have been labelled as having refactory cytopaenia with multi lineage dysplasia, a subtype of myelodysplastic syndrome.

Yes my red cells do seem okay RCC 4.8. Perhaps that is why I feel really well. Not sure how to interprete the doctor's description above. Is this a fairly typical description of MDS?
Thanks
Nonie

[chris]

Dear Nonie

I am sort of laughing and shaking my head in disbelief when you ask if this is a typical description of MDS! Here in the Uk I don't think many of us would have been privileged to see such a letter from our doctors as it is not common practice to share this level of detail with patients! One of the consultants I saw did write to my GP after each appointment AND -EVEN BETTER- COPIED ME IN and I felt this was a model of good practice but I don't know how common that is. Does anybody else get this as standard practice?

Clearly, you would need to speak to your doctor for confirmation and to allay any worries you have but certainly having a low blast count and normal karyotype along with the doctor's comment that this is favourable in terms of your risk of progression (to AML -Acute Myeloid Leukemia) is excellent news for you. It does look as though all 3 of your blood lines are affected by MDS (hence the tri-lineage dysplasia) but your red count seems to be good. Here we also use haemoglobin levels as an indicator of how the red cells are doing so have you been given results for that too?

Of course, MDS is an unpredictable disease. It seems that it can rumble on for years and then suddenly become something more serious but haematologists are getting better at predicting whose MDS is going to be high-risk and there are a lot more treatments available now than there were even 5 years ago.

Wishing you well.

Chris

[quilt_swim]

Yes I guess I am lucky to get letter. I just asked for it as my local GP wont give me a copy of letters from specialists. The doctor does seem good as he said one of the main reasons to get a biopsy is that if I was taken to the hospital in an emergency the first thing the doctors would do is a blood test. This would put doctors into a panic working out how to deal with my blood results when I may have a heart attack or something and this is what needs treatment not the blood results. I am making my family aware so that if necessary they can handle my blood problems if necessary. My Hb is 137 which is well in the normal range. Perhaps this is why I feel so good. Is it? Over the years my white cells have been low my red cells have all been okay. Will I be better long term do you think?
Nonie

[chris]

Hi Nonie

Personally, in case of emergency, I think it is a good idea to always carry your latest blood test results around with you and the letter regarding your MDS diagnosis - especially when you go on your travels this week! I do this as I am concerned that if, for example, I were in a road traffic accident, I could be at risk of haemorrhaging because of my low platelets and the paramedics/hospital might need to know that. I do always tell friends and family that I am travelling with to draw attention to the letters I always carrry. I have to say that nobody medically has advised me to do this but I am aware of potential risks with my condition. Likewise, with very low neutrophils, it would be important to let them know as any fever might be significant. I have wondered whether a medic-alert bracelet would be worth getting but not sure if that would be over-cautious?!

It's great that you haemoglobin is in the normal range and that is why you are not bothered by fatigue symptoms. Personally, although my Hb count is a bit lower, it seems to be holding up OK and I am very very grateful for that. Not sure what you mean by your final question? Looking at the information available, it seems to me that the MDS patients with the lowest risk of progression to AML and longest survival times are generally those with straightforward Refractory Anaemia (RA) or RARS (RA with ringed sideroblasts) or another group with Deletion 5q i.e. in all these sub-types only their red cells are affected. But, as I said before, it is a hugely diverse disease - it's almost as though the different sub-types are entirely different diseases - though they have the same cause of bone marrow failure. Even though I have now been involved in this forum, attended several Patient Forums and logged onto US webinars, I've yet to find anybody who has had the same symptoms and is at the same stage of CMML as I am!!

If you had not had the blood tests and BM biopsy, you would be blissfully unaware of MDS and probably none the worse for not knowing as it is not giving you any "bothersome" symptoms!! If you can, it's perhaps a good idea to try to put it to the back of your mind and just get on with enjoying life. When I was first diagnosed, I spent a lot of time being highly anxious and depressed about it all but, 4 years on, I'm still here and only minimally aware of any problems caused by the disease (enlarged spleen and occasional evil mouth ulcers!!).

Take care

Chris

[quilt_swim]

Well my last month or so have been taken up with a lovely trip to South America and before that a few weeks with bronchitis. This illness caused me concern with the trip planned and required a couple of doses of antibiotics. However I only had a cough when I embarked on a charter trip of 200 people to South America. Great trip and I kept well which was excellent because lots of people had coughs and colds along the way. We visited Cuzco and Machu Picchu and I was a little concerned with altitude problems as I do find when I walk uphill at home I get breathless. I managed very well and whilst I did get breathless in Cuzco walking uphill so did most of the other travel passengers and we just stopped to get our breath before continuing on our way. I went snorkelling in Galapagos which was my favourite part of the trip. I do not know why it has taken me all this time to try this. It is so wonderful seeing the fish, seals etc swimming underneath you. Now I want to go to the Great Barrier Reef!

With a very cold and wet winter under way here I am just trying to avoid any illness and have started back swimming 3/4 times a week which I hope helps to keep me fit.

[janetstanford]

Hello
Glad to hear you have had a great holiday and the walking up hill yes yes i have the same issue when bloods are low
but really good to hear your health in general stayed good and you had a great time
take care Janet