Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
A support group for anyone affected by leukaemia to come together, share experiences...
Hello my mum is in her 60’s and has just been diagnosed with ALL. She went into hospital in January with sever anemia with very low bloods across the board. They gave her two pints of blood but decided that they did not need to do a biopsy. They monitored her with blood tests every week and on the forth week called her back to the hospital. After testing it was confirmed ALL pre curser B Cell type. Her bone marrow Is 90% leukaemia cells which sounds terrible but I don’t no what to compare it to.? She has had another two pints of blood and steroids and if her echo gram is okay will start intensive therapy this week and they seem to think she might be eligible for transplant later. But I can’t seem to find an article that gives her anymore than a tiny chance of survival I am so scared is there any chance she will recover does anyone here no of anyone in the older group to do well please.
Hi again Feets
Glad you found the ALL forum ok.
I had T cell ALL which is less common than the B cell type your mother had. I was 42 when I was diagnosed so a fair bit younger but the fact your mother is over 60 shouldn’t stop her responding to treatment.
The vlood transfusions are quite normal and should make her feel a lot better as anemia really isn’t pleasant. She will have more transfusions during the treatment to keep her haemoglobin counts at a good level (red blood cells). Also steroids are a normal way to start treatment as they help destroy the white blood cells. I had an intensive 7 day course before I started chemo.
i can toatally understand your worry when you here figures of 90% white blood cells talked about.. mine were at 95% at the start. This is the leukaemia. In basic terms the white blood cells multiply to fast, don’t mature and live too long. So basically over a number of weeks the white blood cells crowd out the red blood cells and other cells.
With regards to not finding any positive stories it is probably because in your mother’s age range there aren’t many people diagnosed in the first place.. it mainly affects children and the over 75s. Even if you do find any statistics they will be form people who had treatment probably at least a decade ago if no much longer as they will be long term survival rates. The treatment has come on leaps and bounds and stem cell transplants (modern day version of bone marrow transplants) are now quite commonplace.
There is a forum for stem cell transplants which is very active and there are a couple of people in there who have experienced ALL and then a stem cell transplant.
also speak to your mothers CNS (clinical nurse specialist) at he hospital where she is being treated as they will have lots of information to help you understsnd the treatment. Where is your mother being treated?
Also feel free to give the Macmillan helpline number a call. The number is below in my signature. They can offer a lot of support both emotional and practical and there are nurses you can speak to in order to ask questions.
Any questions please just ask.
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Hi again Feets and its good that you have been able to get up this new post (your other one had a technical issue)
I do not have ALL but a rare type of Non Hodgkin's Lymphoma, I was actually diagnosed way back in 1999 when I was 44 and yes I am still around and doing well. The main reason I am still alive is due to Stem Cell Transplant (SCT) - also often known as a Bone Marrow Transplant.
I can't give you any help with regards to the technicalities and prognosis of your mum's ALL but I see that you have put a post to Caroline or Macmillan Heamatology Nurse so I am sure she will get back to you but it will take a few days.
As for SCT, I have been through two using Stem Cells From my brother, I was 58 and 59 when I had them and often talk with folks much older who have been through the life changing and saving process. Yes, it was hard work but do-able and with out ti I would not be talking with you today.
Searching for articles that give you clear and trust worthy information is like looking for that needle in a haystack. Blood cancers, regardless of the type are very individual and will require an individual approach to treatment so the very best people to give you all the information you need is her team. Get a list of questions ready for each appointment or meeting and ask them so you can understand the plan they have for her.
If she does end up going down the SCT route that will be well down the road as she needs to be medically in a position to be able to go through the SCT. So you do need to concentrate on the now and the first few steps along this road.
We do have a SCT Forum where folks support each other on this journey. This is a link to The SCT Forum. you can have a look round and if you think we can help, join the SCT Forum then hit the 'Start a Discussion' tab and introduce yourself. To help you keep in contact for each of the forums you join make sure you go to the right and select how you want to receive email notifications.
For some encouragement follow this link to a thread about successful SCT Stories.
We are always around to help out.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi again Feets, the great reply from Paul1969 reminded me that I did a life after cancer course a few years back and there was a man who had ALL and also had been through a SCT.
He was 64 at the time he was diagnosed and 65 when he had his SCT - the SCT was actually done on his 65th birthday and he said that it was the best 65th birthday gift he could ever ask for.......and he is doing great.
This is early days and its all about getting clear information that then leads to a clear plan and with this the whirlwind in your head will start to calm down ((hugs))
Hello Paul1969 and Thehighlander Thank you for your replies i did get to speak to mums Doctor on Monday this week and I took the details for the Nurse in charge of her care but I didn't want to bother him as i imagine he is very busy.
My mum said he was great though. He took the time to make her feel better and explain everything the doctor had said after her first visit, I think the consultant had frightened my mum greatly, he even brought a patient with a different but similar blood condition to meet my mum so that she could see not to give up hope.
Any way last night she was take to isolation so we were all preparing for the horror of chemo side effects... and then today My Dads calls and tells me that the consultant has just been and said that Mum has Philadelphia Negative ALL apparently this is great news and she can go home tomorrow with lots of tablets and i think 1 day a month intravenous. when i see my mum today she is like a new woman hair even in pigtails full of the joys of spring.
I am pleased of course delighted but i don't understand even more now as i missed the consultant today she says she wont need bone marrow transplant and the steroids are having a good effect but what? induction can be done via tablets?? that don't seem right or is she under estimating the side effects the pills will cause. yesterday they are saying she may have 18 months and today its all better. well, not but you see what i mean.
I really want to just believe her but wow what a roller coaster it has been and i guess it has only just begun. I am going to spend this time just trying to enjoy the fact that she is happy (and maybe catching up with some work) and hope that the next ride is a bit more like the caterpillar and not the Pepsi Max (showing my age)
Thank you so much for your words of encouragement hopefully i will be able to offer the same positive sentiments to someone else's loved one soon. I am definitely off to give blood next time they visit town. Its such a small thing that means so much to so many and i am a universal donor so i know it will be of use to someone.
Thank you again.
being Philadelphia negative is good news.
i have to say that I don’t really understand the treatment they are going to give as it is totally different to anything I have heard of for ALL which usually consists of at least 3 rounds of chemo with the chemo being given at least 2-3 times a week IV and intrathecal chemo.. I used to need blood products at least weekly as well.
The chemo knocks out the immune system each time which means some long stays in hospital. It is possible they may attempt some of this with your Mum as an outpatient but IV treatment just once a month just doesn’t sound like treatment for ALL.
During the first week of my treatment I just had steroids and then went onto chemo twice weekly for the next 4 weeks followed by another two rounds of chemo. I didn’t have the Philadelphia mutation either.
Perhaps it would be worth you speaking to the Ckinical nurse specialist to understand what the treatment will entail. ( they wont be too busy to Talk) in case the proposed treatment has been misunderstood . Which hospital is your Mum getting treated at?
Good luck with everything
Good morning DX and some good news in your post this morning and this all helps turn the noise down in the brain.
With 100 varieties of blood cancers, the differences in treatment is massive so getting clear info from the experts is so important.
Totally agree with Paul, never think that the contact Specialist Nurse is so busy that you can not call them.
They are the people who put everything into a language that you will understand - so call them.
Doing this with a list of questions down on paper will ensure that you have a clear understanding and that your mum had picked up everything correctly.
Yeah I am going to maybe email that way he can reply at his convenience. Mum is being treated at the Leicester Royal. Your treatment sounds like the one mum was originally going on I will let you know what is said if you like. Or it is quite possible that I have it all wrong...
Thank you I think I will contact them.
Hi, I thought I would join your discussion as I am a 58year old female who was diagnosed with ALL pre curser B Cell on 30th July 2018. After having 7 days of tests etc I had the aggressive chemo for six weeks which got me into remission. After 9 days at home I returned for further chemo treatment and left hospital after 6weeks and 2 days. I then have had two bouts of chemo and have still kept in remission. I have had good days and bad days but nothing that I couldnt handle. The doctors and nurses have all sorts of medications to stop the sickness etc. I have had my pic line removed today and a Hickman line inserted, so a bit sore at the moment. Tomorrow I will be admitted to St James Hospital, Leeds to start my Anonymous donor stem cell treatment. I will let you know how I go on. I see it as the light at the end of the tunnel. Good Luck to you and your mum, I hope that everything goes well for her.
Hi Shellyy I am glad to hear things are going well for you it has been a while since I logged on I don’t seem to get notifications from this site when people comment? Anyway you must be on your marrow recovery journey by now I hope it goes as well as it can do... my mum has gone down the UKALL 60 treatment path which is pretty much all outpatient based... although you do still spend most of your time back and forth she is just coming to the end of her first round of treatment she has had chemo and a number of them straight into the spine to protect the CNS... the specialist has said there is no cure as such for people my mums age but the aim to get into remission and stay there as long as possible... my mum has a phillidelphia mutation which I believe means it can be managed this way for a number of years if she is lucky but it’s still so difficult for me to accept that she will never be cured... it’s just seems so unfair.
Thank you for sharing your journey I really do appreciate it .
i just wanted to up date you as my last post was a little miss leading...
you were right mum has had chemo twice a week and a number of these go straight into the spine to protect the CNS but it think the dose is lower so it is managed as an out patient although you do go to hospital three times a week... my mum does have the phillidelphia mutation which used to be a bad thing but it is not anymore they have targeted drugs for that now... the nurse in charge of her care kindly emailed me some information.
He said that we do not looking to cure mum as such but aim to get to remission and stay their for as long as possible while leading a fairly normal life along the way...
people my mums age have had longer better quality lives this way. I believe this is because the mortality rates on the aggressive chemo are high due to the toxicity of the treatment itself.
I also feel the need to explain my frequent errors in my post’s I am ADHD and sometimes the eagerness of trying to get information out I forget to check it before hitting the post button this also makes it difficult for me to Remember what exactly what was said sorry if I confused you .
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