Newbie xx

Hi Sparkly, I was diagnosed with Myelodysplasia (MDS) in March 2015. You can view my profile in which I detail how I was diagnosed, just click on my username to find out. I was at hospital just on the outskirts of Belfast yesterday for my latest results which thankfully were stable although haemoglobin, neutrophils and platelets were low. I was told that having MDS is rare, haemachromatosis is also rare and in my case to have both is almost unheard of.

I've had my diagnosis of MDS for 7½ years now and it is treatable but incurable. Occasionally I am neutropenic because my neutrophils count is less than 1. Yesterday it was 1.17. I fully understand that you are frightened, there are occasions when I am, let's say, greatly concerned. 

Sparkly, I hope you have a long history of being treatable and you become less frightened.

Tvman xx 

Thank you xx It's good to insights. I am far calmer today. It's thar overwhelming not really knowing what's happening thing that gets me every now & again x 

Hi again Sparkly, so inconsiderate of me to forget to welcome you to the group although of course I wish we'd met elsewhere. I hope you find this group a wonderful place for support. 

Tvman xx 

Hi again Sparkly and well done navigating across to this corner of the site. It’s good to see my friend tvman picking up on your post.

There are a number of folks in the group with  POLYCYTHAEMIA VERA so let’s look for the members with this condition to pick up on your post, you can also look through all the group threads (hit the group name and scroll down) and as always you can hit reply to any post.

Talking to people face to face can help a lot but during these strange times it’s not that available but do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups most are online at the moment….. the one i attend does have a few folks with PV in it so worth checking.

The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. You may also find our Ask an Expert section helpful but do allow a few working days for a reply.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

Always around if you need further help or just want to talk

All the very best.

Hi, I'm a newbie too. My husband has recently been diagnosed with MDS. I am his carer. It is encouraging to hear that you are still alive and kicking 7 1/2 years on!!  Well done. We have our 2nd appointment with haematology on the 6th December. So far, all he has been offered are blood transfusions to keep his Hb up above 70. I'm hoping he can have EPO injections too. Looking for support and information about this rare condition. 

Thanks in advance.

Hi L8girl57 so sorry you've had to join us but lovely to meet you. Yes, I'm still around after 7½ years and I can definitely attribute that to the epo injections. The name of the liquid compound is Aranesp. Your husband's Hb is very low, when mine dropped to 82 I collapsed but I suppose different people succumb at different levels! 

I'm not a medical person but I would guess that a blood transfusion would be more beneficial for anyone with low Hb, but maybe it's the opposite. I'm not sure if you can have both, that's a question for your husband's haematologist. For me, I'm in a Catch 22 situation because I have another blood condition called Haemochromatosis which is given the name of iron overload. Now because I have too much iron, or ferritin, in my system which can be deadly, obviously a blood transfusion would not be at all good. For my haemochromatosis, treatment is blood removal to remove the ferritin but of course that would also lower my Hb which is the last thing I need for my MDS. All that is detailed in my profile and that can be found by clicking on my username.

My good friend Mike Thehighlander has given his usual great advice to Sparkly in a previous reply in this thread. Have a look back, you won't need to look too far back. Perhaps you have already read it.

There is an MDS support group which you can read about symptoms etc that you can research online. I found it very useful, but you don't want to leave here as there is so much support here, whatever your husband's diagnosis. One thing that is being emphasised in the support group is that a haematologist, when giving a diagnosis of MDS is to explain to someone that MDS=blood cancer and they won't find out in front of a computer. In my case I was advised to go home and read up on my haematologist's diagnosis. For months I didn't understand that I had a blood cancer!

If you want to contact me at any time, I shall reply and I'd love to follow your husband's journey. 

Sorry for such a long reply but I wanted to cover a lot.

Tvman xx 

Hi Tvman,

Thanks for your reply and information. Yes, I have joined the carers only group too. Don't know if you have read my profile? Hubby has GBM4 too, tumour removed in March. 1st scan no regrowth. 2nd scan next week. All treatment was stopped after he had a huge allergic reaction to the Temo cancer drug. He still has very bad eczema from head to toe. As regards to his Hb, it is back up to 72 and that's with having transfusions every couple of weeks. We were in A&E last Friday as his temp was up to 38.8 and swelling to his forehead. His torso was bright red. He was put on antibiotics which has cleared up the infection. Whilst there, the consultant said that his white blood cell count was a bit low, albumen too. I will have to ask the haematologist what all these figures mean. PS he was offered a bone marrow biopsy, but he declined. And to be honest, he's been through so much already, the dr said it wouldn't tell her anything more that she didn't already know. And, having a terminal cancer anyway, they will just manage the symptoms for as long as necessary. 

I guess the admin team will contact me to send me somewhere else.

Thanks again,

L8girl57

Hi again L8girl57, yes I have read your profile now and I can't begin to express my pain for you and your husband. To have GBM4 is bad enough but then to be diagnosed with MDS too is horrendous. Please let your husband know that I and my fellow incorrigibles (as we humourously call ourselves) are here for support for him. I can almost see my fellow sufferers nodding in agreement. If your husband wants to join our group of merry men and women he'll be welcomed with open arms. 

I'd like to send you a friend request so if your husband can't join us then you can let me know how he is from time to time. I won't be offended should you not take up my offer.

Tvman xx