Hi All
I've been in the periphery of this group in the last couple of weeks but at the moment feel so bewildered, I don't think that I can even search amongst topics posted so would really appreciate any advice from you guys.
My partner is 33 and has type 2 diabetes and some discrepancies in a routine blood test led to his GP asking him to have a FBC. We found out on 17 May that he had AML with 20% blast cells and he was started on cyatarabine the next day, receiving weekly chemo treatment once a week. After a week or so from diagnosis he had an MRI scan and it showed the cancer was spreading and was near his liver so the chemo dosage was increased.
He had a FBC last Wednesday and received the results today, telling him the blast cells had increased to 40% and his chemo has been changed to high dosage Daunorucibin and has been told his chance of survival is 20%. He will have another FBC in 8 weeks to see if the Daunorucibin is working.
Understandably we are devastated with the news. He has not had a bone marrow biopsy and has been told that if this treatment doesn't work then the next step is radiotherapy and then a stem cell transplant, he is being treated at Croydon university hospital.
A further added complication is that we live 90 miles away from each other, his plan to move closer to me was put on hold due to the illness, it kills me that I cannot attend his treatment sessions or meetings with the consultant and at present, no family members are aware that he is poorly.
ANY advice you guys can share will be very much appreciated during this tough time.
Hi and welcome to the Online Community, although I am so sorry to see the circumstance around why you have had to find this corner of the Community.
i am Mike Thehighlander and I help out around some of our blood cancer forums.
A blood cancer diagnosis can bring a lot of stress on a family but talking with people who are on the same journey will help a lot and will help reduce the whirlwind that is rushing in your head.
The diagnosis of a blood cancer can come out of the blue and just takes time to work through the fog in the head. I have lived with a rare type of Non Hodgkin's lymphoma for over 20 years and I am still around - yes it was hard work at times but this journey can be navigated.
The distance problem is so hard and just adds to the stress but FaceTime can help a lot.
When I had my two Stem Cell Transplants FaceTime was so invaluable as I was away from home in Glasgow (9 hrs round trip) for a total of 11 weeks over two years and all our family and friends were back in Inverness.
The information is going to come thick and fast and you do need to prepare for this to be a long rollercoster journey.
From my point of view it was so important to bring all the family with us as they were able to help and support in so many ways. So i would have a good discussion about forming the family as this is not an illness that can be hidden.
The treatment of blood cancers can be complicated and will often require a number of changes in treatment plans and often the changes can be quick as these can be a reaction to the ever changing presentation of the condition.
Stem Cell Transplant, although hard work can bring great results. If you find he is going down the Stem Cell Transplant route we do have a dedicated Stem Cell Transplant Forum where folks from many types of blood cancer walk the journey together.
Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link......... and it is a great place to chat with someone.
We also have our Online Information and Support Section where you will find some great pages covering the cancer diagnosis, treatment and information pages covering most types of cancers.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.
When you feel up to it thank about putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.
To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - REMEMBER hit the big green SAVE before you leave the page. If you're not sure what to write you can take a look at any members profiles by clicking on their username.
Keep talking and asking your questions as we are around to help.
I am sure that some of the AML folks will pick up on your post and get back to you.
((hugs))
Hi again , well done in getting some info on your profile. The one thing NOT to focus on is survival rates - a blood cancer journey is NOT standard across each patient so everyone is a statistic of one.
5 years back I was told I had 0% survival rate past 30 months and the only way this clock could be changed was with my treatment plan working - so all our attention was in getting through treatment and a successful result at the end.
I know this is hard to do, but your job is to keep your eyes on the greater good in all this looking for a good result in the end. You don’t have control of the breaks, but you do have the power to control the noise between your ears. Yes it can be a hard journey but it is do-able.
Some of the AML folks will be along but sometimes it can be slow as these folks are living on their treatment rollercoaster ((hugs)) and xx
