AML I the a runx1 mutation and stem cell replacement

Hi  and welcome to the Online Community, although I am sorry to see you finding us.

Although I have a different type of Blood Cancer, I have been through through two Stem Cell Transplants (Replacements) with Stem Cells from my brother. First in June 2014 and the second in October 2015........and hear me..... I doing great.

We actually do have a dedicated Stem Cell Transplant group where people from many blood cancers including AML hang out and support each other on the SCT rollercoaster.

So why not follow the link I've created above, 'join' the group then introduce yourself to the group and post questions after selecting 'start a discussion'.

Stem Cell Transplant saved my life and indeed got me in to remission in September 2016. This was from a conditionI I was diagnosed with way back in 1999 when I was told back then I would never see remission - what's not to like.

Can I also highly recommend our various Macmillan Support Line Services - you can call them free on 0808 808 00 00 This service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link and you may also find our Ask an Expert section helpful.

It would help a lot if you could put some information in your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you.

All the very best.

Sorry, that sounds very specific. You might not find others in similar situations here. What is STR?

Many thanks for your response. 

I went back to hospital on Friday thinking U would have my picc line refitted as the one during my first treatment had to be removed because of infection. 

However, it turned the nurse who do the procedure were overloaded so I thought that I could go home until Monday morning. That wasn’t the case as my bloods showed that my kidneys weren’t too happy and I had to stop in over night for 16 hours of intravenous saline. I managed to get out by 2.00pm yesterday to spend precious time with my husband before hoping back thus evening so I will  be ready to start the next round of intensive chemo on Monday. The final round will be in Nottingham to prepare for the stem cell replacement.

Thank you for your advise regarding the stem cell replacement group which I will do.

Regards Suzie1510 

Hi Alzjunkard

I do seem to have very specific problems but don’t really know where else to go for support.

I think I should have written SCR, stem cell replacement and STR.  I should always re read what I have typed before sending!!

Many thanks for your response and hope all is well with you.

Sue

Hi again , sorry to hear this issues you have been having - you have to expect the unexpected in this journey.

Stem Cell Transplant is the main term used....... are you having an Allogenic (Allo) SCT with cells from a matched donor?...... as I can understand you using the term replacement. I had two Allo SCTs.

You have joined the Stem Cell Transplant group, this is a good place to connect with others who have walked the walk.

Do put a post up and introduce yourself to the group or just have a look through all the discussions.

I see you posted a question to our Jane our SCT haematology nurse - she will get back to you but this is done as a volunteer- she dies not work for Macmillan on the Community full time,

In the journey we do have lots of time doing nothing so why not put some information in your profile as this can help a lot. Click here to see how to add details as this helps everyone to see a little about you and how best to reply to you....... and you can hit our Community names to see our journeys.

((hugs)) from a distance,

Hi Highlander 

I hope you are okay now after having two transplants, was that for AML? You are right I have been confused about the difference between SCT and SCR. The nurses here at the Royal Derby explained to me last night. I am back in my old room with a view which is great as I can see horizon looking towards where we live.

I have been on saline all night with a cannula  and hope to have the pic line put in place this morning in order to start next round of chemo later today. I hope there might be also some news of a donor but that might be too soon. 

Thank you for the hug and I send you mine too.

Good morning , I am pleased that you have a good view now, during my first Allo SCT I was on the 6th floor looking at a grey building for a month.

No not for AML, but a rather rare Skin Non Hodgkins Lymphoma - you can see my journey by hitting Thehighlander...... but long story short I am doing great now 4 years 4 months and 16 days post my second SCT (not that I keep a record) from a condition that in1999 - I was told it was treatable but incurable...... and would never see remission.... fast forward to Sep 2016 I was told I ‘was’ in remission and still am but under no illusions that it can’t come back.

My brother came back as a 10/10 match within two weeks so I have been very fortunate. Finding the very best genetically matched donor will take time as they will test any siblings, search the UK and international donor registers...... your donor could come from anywhere in the world ! Then it’s all about logistics as they arrange for the person to have their Stem Cell Harvested, frozen and transported to the UK.

Then the real manic starts as you go through the preparation then Transplant.

My first PICC lasted 5 months with no issues the over my two SCTs I had 4 Hickman's - two stopped working so had to be replaced the day before getting my new cells.

Do try and put some information in your profile as this can help a lot. Click here and come over and introduce yourself to the Stem Cell Transplant group as there is a lot of support in the group including others who come from an AML background ((hugs))

Hello Highlander

I am very slow in replying to you but I don’t always feel up to battling with the predictive text and having to keep re reading and correcting!!

I had my second dose of chemo yesterday, the first on Monday gave me a reaction of a stabbing lower back pain. I panicked a bit but after a dose of morphine, steroids and paracetamol they managed to get the rest of the treatment through the PICC line. I am feeling fine now and just have another dose on Friday before the bloods start to plummet and then wait for recovery again.

I have had to have some more bloods taken for donor match as the first ones went missing between the hospital and Anthony Nolan Trust. However the nurses, here, say they will be given priority so shouldn’t take too long for a response.

I am so pleased you are in good remission and like you I think I would be counting the days, hours and minutes.

I have had a try to put my profile on the stem transplant site but had some difficulty because it said access was denied, I was obviously doing something wrong. I will try again.

Many thanks for your support.

Suzie1510

Yes, the humps and bumps of the journey can come along but good that you got through your second dose and your team will keep and eye open - as you will during your Friday hit.

Frustrating about your blood tests getting lots - but not unusual. The Anthony Nolan Trust is not the only Register so make sure your team are looking at the world wide register as well.

The site has a few glitches but I see that you have just joined the Stem Cell Transplant group so:

Follow the link I've created

Look for the 'Start a Discussion' tab and give your post a heading

Then go to the big text box and introduce yourself to the group.

To put information in your profile Click here to see how to add.

If you want to change a post go to the bottom of your post and hit 'More" and then 'Edit'