New here - Hello

Hi Gman and welcome to this corner of the Community. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Acute Myeloid Leukaemia (AML) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of NHL reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the journey rather well.

It’s good to hear that although your journey had been challenging that you are out the other end and your in remission.

I am sure that the group would benefit from you being around to help out especially those who are at the start of their journey.

Always around to chat

Hi Mike, 

Thanks for your reply and good to know there are always people out there to help\discuss with. I benefitted when in hospital with talking to others who had gone through the treatment I was starting and I think being positive helps, although this can be hard at the beginning of treatment and just getting yourhead round that you have cancer.

Thanks

Garry (Gman)

Good morning Garry Gman 

We can’t overestimate the benefits of using our story to support others…… it’s a win win.

The people you support win as they instantly feel supported and their journey is that more manageable.….. and you win as you are turning your treatment challenges into positives.

I have been volunteering on the Community for over 6 years now and have no regrets giving up a small portion of time to do so.

You may want to consider setting up your profile ‘your story’ as it really helps others when replying to you and also when looking for someone on a similar pathway.

It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend your profile at any time and if you're not sure what to write you can take a look at mine by clicking on See my story….. but my one is more like war and peace.

Always around to chat.

Hi Mike,

Yes good idea about 'your story' which I will do in due course and yes your 'my story' is a bit of war and peace!! and sure it has\does help others.

Thanks

Garry (Gman)

The problem with my specific type of Lymphoma is very rare (7 in a million) so people can have a hard time getting any accurate information let alone talk with someone who has had it and come out the other end.

Wow that is rare and can understand why it’s hard to get information about it, I thought AML was rare with around 3000 per yer diagnosed but nothing like yours! It shows forums like this are so important. Tbh which I had joined earlier. Garry

I also wish I had found the Community especially before I went into Stem Cell Transplant but I am now in the position of being able to help others.

I don't fully understand the challenges of blood cancers like AML but I drop past these groups just to make folks welcome.

Do please reply to any new people joining the group as there is nothing better than talking with someone who has actually navigate MF the journey.

Hi, that’s great news about being in remission!! My mum had an appointment tomorrow to see if she is suitable for intensive chemo as the other treatment was not working. I’m pretty anxious. How did you feel during the intensive chemo?

Hi, Sorry to hear that your mums other treatment did not work. Whilst in hospital I came across people who like your mum had undertaken the treatment that had not worked and went down the intensive treatment. So I don't think this is unusual! I spent from Feb - July in\out of hospital having 4 cycles of Intensive Chemo. All four cycles were different, the 1st one was probably the hardest because I was poorly when going into hospital and did get an infection and a number of side effects which is pretty much the norm, mind you some people do go through Chemo and have very few side effects it is very much individual dependent. The treatment lasted about five weeks. Then I had 10 days at home which was great to get home. My 2nd & 3rd cycles were not as bad as the 1st one but I did have infections an aside effects and both lasted about 5 weeks with 10 days at home in between cycles. My 4th cycle was as bad as the first as It was a different Types of Chemo and I reacted to both of them and had a bad infection. The good thing is that as you are in hospital and the nurses are around a lot of the time and with daily blood tests if you are getting an infection it can be delt with very quickly and get you on antibiotics, especially when your are neutropenic. You have good days and bad days and some times the bad days last a few days or longer when you have an infection. I had lots of support from the nurses and Drs with specialist Macmillan nurses who come round and were available to talk about any questions or concerns. Also the others in your ward who you do get to know very well and some of these would have been through what you are about to. I found it very beneficial to discuss treatment with them. Of course some people like to keep them selves to them selves and my view is that they have a harder time dealing with the treatment than iif you talk about it. I was pretty positive and looked on the upside that I was having treatment, but I know that can be difficult for some people. Hope this has been helpful and good luck with your mum, Garry

Hello Gman,

Very interested and confused as everything I have read about AML is that there is no cure or remission and the only option is a SCT. I was Diagnosed with MF four years ago and have been in “watch and wait” until recently when blood tests show “blasts” and low hgb suggesting the race to AML has begun. What hospital has been treating you?.

Naugus