Failed First Round of Chemo.

Hi and welcome.

Not unusual in some blood cancers for the first line chemo not to work and have to move onto another plan.

There are a number of folks in the group who have been on FLAG so let’s look for them to pick up on your post.......... has Stem Cell Transplant been mentioned?........ as FLAG is often used as a pre SCT treatment.

When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

Hi Thehighlander,

Stem cell transplant has been mentioned. In fact, got an appointment at The Christie on Monday. My first round was finished by the time my consultant got the results from my cytogenetic test, which showed I have some genetic thing that makes it harder to treat. Maybe I would have been on flag in the first place, if results came back on time.

Hi again, ok so my guess was on the right track.

So can I also strongly recommend that you join our very supportive Stem Cell Transplant (SCT) group.

SCT is very complicated, but at the same time a rather simple process. But you do need to talk with others who have been though it especially before your first meeting.

You will see from my profile (Thehighlander) that I have been through two Allo SCTs with Stem Cells from my brother...... it’s a long story but I have been in remission since September 2016 from a rare condition that back in 1999 I was told that I would never be in remission from and it would get me some day some year....... not!

It’s better if you join the SCT Group as this will keep all this side of the support in one area as there are folks in the SCT group from various blood cancers including AML...... SCT does come with a warning and looking at some the discussions can be hard, but for some - like myself it was a roll od the dice choice.

I will keep an eye open for you in the SCT Group

Well, my stem cell transplant is targeted for, March. This is providing that my round of Flag Ida is successful.  Been at home 3 weeks, now and waiting to get admitted. Don’t appear to be in a hurry and  I have mixed feelings over that. Nevertheless, feeling optimistic and trying to find some way I can help things. I heard of research claiming that ginger can  kill leukaemia cells. Whether much in it or not, been having regular ginger tea and some stem ginger. I like it, so nothing to lose.  Just hope my hair doesn’t regrow, ginger :) 

Hi again , we would always work on 'a plan is a plan.......until they change the plan and move onto the next plan'

Lol about the ginger tea and the hair........ nothing wrong with ginger tea so enjoy it.

The time this is taking is not a big issue as your team will have a good understanding of safe timings for going forward and there are a lot of things to get organised including a lot of tests for you to go through.

I have put this link to the Anthony Nolan Site as this gives great infomation.

Were you told what type of Stem Cell Transplant they are among to do?

Is it an Auto SCT where they will get you into remission, harvest your Stem Cells and after some more chemo give you the Stem Cells back or is it an Allo SCT (I had this) where you would get Stem Cells from a matched donor?

There are not a lot of folks in this group who have been on the unique journey that Stem Cell Transplant takes you on so please do join our very supportive Stem Cell Transplant group as we totally understand this rollercoaster.

Just follow the link I have created then hit the ‘Join This Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your very own Discussion and introduce yourself to the group and ask your questions.

((hugs))

Hi Mike, 

Not been told what type of stem cell transplant I may be having. They did say there are  a good few potential donors for me. My brother and one sister were not matches. My other sister had breast cancer, recently, so didn’t test her.

I have had more tests than a North Korean missile and had a CT scan the other day. More to come, I guess. Had blood too and feel pretty good right now. Maybe that and the ginger helped lol. Had a good look at the stem cell group. Very informative.

"....... more tests than a North Korean missile"....... you will fit in very well in the Stem Cell Transplant Group lol

Hello 

I went through AML treatment in 2015.  I'm also an Ambassador for Bloodwise, KnowAML and Macmillan.   

It is not unusual for the first cycle of chemo to 'fail' and this does not mean the end of the road or 'failure' as you probably know it usually means in life.  AML is a very complicated disease and no two people are alike or will have the same reaction to treatment.  Many people don't go into remission after the first cycle of chemo.  

The cytogenetics you mention are the tests done to determine the subtype of AML you have and therefore tailor the treatment more to your case.  You may also hear 'mutation' for example mine was NPM1 or FLT3... there are also others.

Have you been introduced to your CNS (clinical nurse specialist) yet? Usually a Macmillan nurse.

Also you can get some really useful and easy to understand information from the Bloodwise website where you can order booklets, Macmillan (who usually have an patient information room at hospitals and their volunteers all have medical backgrounds so a great source of knowledge) and the KnowAML website  https://know-aml.com/en or youtube channel (just type in KnowAML) has some brilliant animations about all aspects of AML which are so useful for you and your loved ones.

I hope this helps and feel free to ask me anything

Best wishes

Anna

Hi Anna, 

Thanks for the reply. Yes I have met my Clinical Nurse Specialist. I just put the cytogenetics and failure of first round, as my typical awkwardness. Have got a useful Bloodwise booklet about stem cell transplants.  I will have a look at the link as I like animations.

Thanks

Stu

Hi Stu

Ok so your clinical nurse specialist is someone who will be able to answer questions about anything and everything, in my case my husband and mum would email her whenever anything was bothering them about my situation if she wasn't available.  Also the nurses are also a good source of information, if there is anything your consultant says that you forget or don't understand just ask them to go over it again with you... mine did and they were very happy to.  Don't be afraid to ask if something is bothering you.  It is all so complicated in the beginning and a steep learning curve so I get it.  

Bloodwise do lots of booklets on different aspects and they are all free.  If you like I can point you in the right direction... but don't want to overwhelm you because I know what its like, so much to take in.  Suddenly you are thrown into this world full of medical jargon, tests, treatments etc and I remember it well.

Regards

Anna