Acute myeloid leukaemia

A place for people affected by acute myeloid leukaemia (AML) to support one another, ask questions, and share their experiences.

Please help - lost and distraught

Meena101
Posted by

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.

Thehighlander
Posted by

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 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))

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

Meena101
Posted by

Hi Mike

Thanks so much for getting back to me, it really is such a scary and bewildering time. The future seems so terrifying and I just wish I could put the brakes on and stop this rollercoaster ride. I've updated my profile as you suggested.

Thanks again

Meena

Thehighlander
Posted by

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

Mike - Thehighlander

It always seems impossible until its done - Nelson Mandela

jaymacabc123
Posted by

Hi Meena 

im so sorry for BOTH you and your partner.  It affects not only the patient but those that love them too and I really feel for you being so far away from him.  Although our family knew my husband was ill they all live in another country 12 hrs nearest flight away so I know it can be so lonely to carry the burden alone.

You can’t stop this horrible rollercoaster (unfortunately) but your grip on the safety bar is far stronger than you cld ever dream possible.  You will get thru this.  Somehow. Even when it seems you can’t.  

I know statistics are so flipping scary but try remember your partner is not a statistic.  He is him.  He is not a number.    

Statistically my husband should be dead (cold hard fact !).  His blasts were 96% at diagnosis and he spent a long time in icu. At one stage drs told me to say goodbye as had hours (not even days!!)  ...to live.  And tonight 2 years later he is asleep next to me ... in remission... snoring loudly (a sound I’m so grateful to get to hear lol).

its not easy, no one can say for sure what your parents outcome will be but ... every day holds the opportunity of another miracle xxxx

 *Learning God is in control and every day holds the chance of another miracle.*

Moondog
Posted by

Hi Meena.

I hope you are ok. You will get through this - Impossible as that seems, but you both will. 

Let your partner know you are emotionally there for him at all times, and if at all possible, be with him whenever you can. He will need a lot of support and encouragement and it's very hard for one person to carry this alone so talk to him about informing his family and friends and roping in all the help he needs to get through the treatment and appointments. 

Wishing you both lots of strength. 

Meena101
Posted by

Thank you so much for your kind words, they are very inspiring.

I'm attending his next chemo session next week, as the Cytarabine did not work, he is now on Daunorucibin.

Do any of you have any advice on what kind of questions to ask the consultant? He just goes in, has his chemo and makes a quick exit so I feel I need to educate myself but have no idea where to start. I feel as if someone has put a blindfold on me and pushed me on to the M25.

Meena101
Posted by

Thank you Moondog; the feeling of bewilderment hasn't eased at all. I've tried to get him to open up to family but he doesn't want anyone's pity or to be treated differently. I just hate feeling so usless.

Moondog
Posted by

Hi Meena

Unfortunately, the feeling of bewilderment may stay as you are learning as you go, but once you get into a routine of treatment you should feel a bit more in control.

When my husband was ill, he didn't want to discuss it at all and it made me feel so useless that I couldn't help him with the mental torment of what was happening. A counsellor at the hospice tried talking with him (at my request) to see if he would open up to a stranger, but he closed down even more. She advised me that this is simply how some people deal with their illness and if and when they are ready, they will talk about it. I felt more at ease once I realised that trying to get him to talk was what I wanted, not what he wanted, and I was then able to back off and deal with it his way. But I was able to be there for him physically and emotionally, I would imagine the living distance is what makes it all the harder for you.

Your partner seems to be struggling with what is happening and the lack of control he has over everything that is happening so fast. Just make sure he knows you are always there and message him every day. When he's ready and able, he'll hopefully let you help him. He may never want to talk about it, but just knowing he has you there to support him will be a comfort to him.

Keep strong and look after yourself.