[Anne G]

Hi Jeff

I am in a similar situation to you. I have been diagnosed since 2005. I am in a wait and see circumstance. It is not just my neutophils that are effected, my platelets are low and my hgb is just slightly lower that yours. My neutrophils have not changed much since my diagnosis. I think it has only gone up to 0.5 twice in the last 4 yrs when i had really bad infections. I have been fortunate to have only been hospitalised twice in the 4 yrs, however you have to take care of yourself in order to maintain your wellness. It is a bummer to be diagnosed with MDS and whilst you maintain your wellness, take the opportunity to spend quality time with the family and friends and do the things you like doing best. I have to agree with lindajo, you cannot waste you time worrying, once you try to come to terms with disease you will take the best advice possible and learn to manage this disease to the best of your ability. wishing you the best of luck

Anne

[Anne G]

Hi Tory

I have to agree with the others. However, we are only seeing part of the picture and like Bill suggests there may be anomalies in the cells which would suggest MDS. Sometimes doctors do not explain themselves very well or maybe your aunt has struck a plateau where there is very little change and the disease has slowed up for a while.

Maybe your aunt needs to take a note pad with her to Haemotogolist with a list of question she needs answered.

Good luck

Anne

[Anne G]

Hi Elena

I am from Scotland. I have had RCMD for 5yrs and I am still on a "wait and see approach". Wait until the MDS gets worse and have a BMT.

I too like Mucka I have good family and friends to support me. However, my work colleagues do not know(except my in line manager) about my illness. It is difficult enough to deal with this on a daily basis by yourself and trying to overcome your own fears and emotions(as well as your families) without having to cope with other peoples reactions towards you and your disease. Their Idea of coping with it is by changing how they react towards you as an individual or cannot cope with their own emotions.

This is the only forum i have found that gives me the information in such depth from people who care and have a wealth of knowledge. For that I say a BIG THANK YOU to the people on this forum over the years for their help.

There are a lot of people who visit this forum not just from Europe but globally. The reasons for that is, like you me and everyone out there in Europe we do not have anything like this site which is open and honest that wishes to discuss there treatments and strategies for wellness.

Anne

[Anne G]

thanks Mary.

I have been on hrt since 2004 after I had a total abdominal hysterectomy due to years of endometriosis. Gp and hospital have rule hrt and menopause out. The reason I was put on Zantac was the drug was produced for a syndrome called Zollinger Ellison’s syndrome. The syndrome is where a pancreatic tumour secretes a substance causing the duodenum and other parts of the body to ulcerate. Macmillan cancer specialists suggested that as this reduced the night sweats and fevers through the night for this syndrome that it may work for RCMD. I have also tried Valerian route through natural medicine, with no great effect. Neither gp or haemotologist have suggested any medication for raising white cells (currently 2.4 ( usually between 2.4 and 2.6) the only thing that has been discussed is the I will need a BMT, that I will evolve into AML and it is more a case of when rather than if, due to my age. Until such times it is a wait and see culture. At the moment I am unsure why I have not had any infections or illness, due to my low anc count. It is like having a calm phase before a storm.

Once again thank for your help. I will go back on high doses of evening primrose oil and will visit the herbalists. I am also currently reading a book by Jan De Vries (leading alternative therapist) on herbal remedies for leukaemia and cancer care and may contact him to advise of any solutions to my problem.

regards
Anne

[Anne G]

Hi Alister

try asking gp for ranitadine(zantac). This drug was specifically made for Zollinger Ellison Syndrome, although most gp’s prescribe it for stomach complaints. I have been on this for about 12-18 mths(recommended By the Marie Curie nurses) for night sweats. I can honestly say this reduces the amount of night wear and sheet washing.

[Anne G]

I have been diagnosed for 3+ years. Still in a wait and see situation. Haemo does not feel at this time that the disease does not warrent any medical/surgical intervention

[Anne G]

I read the site regularly, and was saddened by the news of Neil’s death. He was a wealth of knowleged.

My thoughts and condolences are with his family.

Anne

[Anne G]

thank you carolineG and choijk for your kind message. My son and and I coping well and have been show so much kindness from family and friends.

thank you

[Anne G]

jules

what I have written does not tie up with my foot note. I was diagnosed as having RCMD in june 2005 after a 2nd bone marrow. had attended hospital from jan 05 and had been diagnosed as having RAEB-1 (hospital made an error) hence the reason for saying 3yrs.

anne

[Anne G]

Jules

I have been diagnosed at 39 as having RCMD.(that was 3 yrs ago). You will see on this site(which is a god send, so much experience and expertise) that there are various types of mds and not one every type is treated the same way or has a specific pattern and that some people have had chronic disease for many years.(agree with Paml)

Initally when your are diagnosed you have MDS it hits home hard.

Everyone’s life expectancy is different too. Live life to the max. Do lots of things on the good days and rest on the bad. Think of yourself as being fortunate and having a window in your life to do the things that you would normally have put off. There are other people who are less fortuate than ourselves. When they are told months rather than years.

It is very difficult to get information and books in the UK and you will probably find that you end up educating your GP. That is why this site is invaluable.

regards
Anne

[Anne G]

Mary thank you for your help I will as the GP is it is possible to get it prescribed.

At the moment my thyroid levels seem to have risen. (lots of greens, brussel sprouts and broccoli) My problem is that this is the only way I can ingest iodine. I have an allergy to iodine. Therefore, I cannot take Iodine or kale supplements. Hopefully, I can keep things on the up.

I am still on supportive care only. My ANC count has only increased twice in the last 2 months. They rose to 1.0. however on both occaisions i had uti’s. I am due to visit haemo in November for a follow up so that will give me a clearer idea.

I am just very fortunate that at the moment things are still on a plateau and do not need anything other than antibiotics for the infections.

Mary thank you once again for your help. I will try anything as the kilos’ are just piling on.

regards

Anne

[Anne G]

Hi Bec

Just an update. Ranitadine is working well at keeping the night sweats at bay. It takes a while for it to kick in. I have been on it since the 1st August and finding it of great benefit. Sorry I couldn’t face coming on the forum sooner, my mum passed away suddenly on the 20th August. I hope your dad is well and that he should give the ranitadine a try.

Good luck

Anne

[Anne G]

Welcome Bill. I too live in Scotland and yes you are right, there are no forums available and very little info too. Like me Bill you will probably spend time educating your dad’s GP on what RCMD and why you need a stand by stock of antibiotics. However, visiting this web site you will find a whole wealth of knowledge. You will find things that you had never even thought of and it is the knowledge that you are not on your own, which is the best piece of info you can find.

Anne

[Anne G]

Thank you for the above sites. I will investigate Asap. I have been offered BMT for when I start to decline. I have also been told my brother and sister are have had HLA test and are not a match. Currently on no medication except paracetamol for night and day sweats and antibiotic prn. ANC has never been above 0.7 in the last two years. If anyone can suggest any homeopathic, herbal or any other therapies to help reduce sweats. Once again thank you for your help. I have read the forum on this site on and off in the last 2years and I have found this invaluable.

[Anne G]

Thanks Maureen. I have searched a lot of site for different pieces of information. Some of which I cannot access to because you have to be within the medical profession. I was a nurse for 12 yrs before I changed occupations and did’t know that MDS existed before my diagnosis.

I will contact AA&MDS International. Thanks Again
Regards
Anne

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