Acute lymphoblastic leukaemia

A support group for anyone affected by acute lymphoblastic leukaemia (ALL) to come together, share experiences, and ask questions.

WHAT IS TREATMENT LIKE ESP SPINAL?

kirsty04
Posted by

HI, i’ve had stage4 womb cancer, breast,and hodkins lyphoma all 3 at same time had 18 months treatment, gemzar was okay but bep and hodgekins lymphoma drug did me in, been cancer free 2&1/2 years then 2 weeks ago got bombshell A.L.L BUT  to be fair the Mac nurses did tell me it could raise its head in future or the H/L could come back because of the chemo drugs from before. 

I’m REALLY NERVOUS this time because they sais some will be done through spinal cord! 

Help! any advise what can I expect? 

Paul1969
Posted by

Hi

sounds like you have had more than your fair share to cope with so far so sorry to find you posting in the ALL section of the community but of course a very warm welcome.

I was diagnosed with ALL back in 2012 and I had a stem cell transplant in May 2013 and have been cancer free for 6 plus years. 

I had treatment at Barts and followed the UKALL14 treatment plan which involved some spinal chemo (intrathecal) from the second round of treatment. First round was about 28 days in hospital from memory followed by a two week break before round 2.

The intrathecal chemo worried me prior to having it as well so I completely understand your concerns. The procedure isnt painful. It just feels unusual which I guess it is! They would sit me in a chair the wrong way round and numb the area.. then needle in. Withdraw some fluid equivalent to the volume of chemo to go in and then put the chemo in. 

Afterwards I had to lie flat on my back for at least 45 minutes. The procedure didn’t cause any pain but I did suffer from head aches afterwards. I tried drinking lots of strong coffee and coke beforehand which was suggested and eventually they tried an injection of DMP (the same as they give children to stop bed wetting apparently) and this helped. 

‘Once I had the stem cell transplant they wanted to continue the spinal chemo but I politely declined as I couldn’t see the logic in having the transplant and then more chemo and the headaches afterwards were just too unpleasant still. I know others who had the intrathecals with no side effects so don’t assume you will get any headaches. As it was a trial at the time there was no evidence to suggest it would help either. I am sure they will have refined the process by now!

if you have any questions regarding any of the treatment please feel free to ask.  If you click https://community.macmillan.org.uk/members/paul1969 you will see my journey with ALL.

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

 

Shelleyyy
Posted by

Hi Kirsty, sorry to hear about all the medical problems you are having. I was diagnosed with ALL 30th July 2018 and have had 6 intrathecal injections (Doctors terms for the spinal injections). As Paul said. once the area is numbed its mostly uncomfortable for a few minutes. I always take a paracetamol just before the procedure and usually try to lie flat twice as long as I am told, and I havent had any problems. I am now recovering from a Stem Cell Transplant and have been told that I will have three monthly intrathecal injections for the next two years (so, 8 altogether). The reason I have been given is that chemotherapy cannot go completely up the spine and around the brain so this is to mop up any rogue cancer cells that may have been able to travel there. Good Luck and all fingers and toes crossed that you will have a great result!!!

Shelleyyy
Posted by

Hi Kirsty, sorry to hear about all the medical problems you are having. I was diagnosed with ALL 30th July 2018 and have had 6 intrathecal injections (Doctors terms for the spinal injections). As Paul said. once the area is numbed its mostly uncomfortable for a few minutes. I always take a paracetamol just before the procedure and usually try to lie flat twice as long as I am told, and I havent had any problems. I am now recovering from a Stem Cell Transplant and have been told that I will have three monthly intrathecal injections for the next two years (so, 8 altogether). The reason I have been given is that chemotherapy cannot go completely up the spine and around the brain so this is to mop up any rogue cancer cells that may have been able to travel there. Good Luck and all fingers and toes crossed that you will have a great result!!!

Paul1969
Posted by

Hi

Yes the 8 three monthly ones are the ones I decided not to have as they had made me feel not good towards the end and I had just had enough of treatments by that stage and as all my spinal fluid samples had been clear of ALL on each test I decided to take a chance. My consultant agreed when I spoke to him and I did say if he could give me any statistics that showed they helped I would have them.. As I was on the trial of course there really weren’t any.. 

sometimes along the journey of the ALL treatment you have to make some decisions about which path you will follow for your treatment and this is just the one I chose. Everyone’s journey is different but we all hope for the same outcome of long term remission and indeed being told you are cured which I am fortunate to have been told.

Where are you having your treatment Kirsty? I ask because within the leukaemia group or the stem cell transplant group we normally have a member who has been to the hospital ( we seem to have them all covered by experience!) and they may be able to give you an insight if you haven’t had previous treatment at that hospital.

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.

 

kirsty04
Posted by

I,m hacving pic put in in private hospital then i hope to have treatment at royal marsden that diagnosed it. 

with the cancer problems i had before it went undiagnosed for so long ven though i was in agony and ended up nearly bleeding to death from hemroging from tumours and it having gone too stage 4  it spread everywhere. I ended up sueing hosp & & gp when i found out sametime as others that my biosy had been thrown into the gararage of the path lab tech/dr who didn’t examine them but tossed coin to decice what resuat would be! itbecause of the a

path tech with over work and gambiling habbit paid by volume or resualts so now going private which is how this got picked up. It makes me sick & shiver bbecause the nhs routine check would not be for 12 months!! 

Royal marsden saved me last time they diagonsed the breadt and H/L when the guild i belong too asked for me to have independant med tests for penssion and sick paymentsalso at that time i did not lnow i had private med insurance!

I had such a rough time last treatments esp with H/L treatment and BEP that was even worse esp the cisplatin, & kept swelling up from steroids no warning one minute legs normal next like a baloon! though once stopped goes down quick with injection to get rid of fluids or make you pee, I’m also Epileptic which worries me , with anything being injected into spine and brain. I now know that depending where you are living depends on treatment here in wales you have too go too court to get treatments or like when i was last in london half the women were from wales but had temp dr’s in ealing, ruislip, plumstead, woolich etc to get treatment that can’t be had in wales also not just treatments and drugs but tests and diagnosis. I was 1 of 279 peppole called to meeting chaired together with health and police to be told qhy cancer last time got so bad, but this time with insurance and comp i have choice to go where i whant, My Oncologist who is american even sugested I go too US my insurance is an US wholly owned company with 30% being owned by fedral gov . 

It certainly be Good weather but a long way! 

I’m glad and happy that you and others replyed so quick the one thing with cancer i found that even family and friends could not look you in the eye too long would make excuses too go if you coughed they would go to call nurse in case you were going too drop dead then and there! & the ones who think or react like they might catch it. 

kirsty04
Posted by

HOW  ARE THE OTHERE DRUGS ? 

SOME I,’V HAD WITH TREATMENT FOR H/L IT DOES SEEM THAT SOE PATIENTS ARE LUCKY ITH THE WAY THEY EXRIANCE SIDE EFFECTS. 

WITH ME LAST TIME APART FROM HAVING 3 @ SAME TIME WAS THE SURGERY I LOST RERODUCTIE ORANS THE BREAST , LYMHNODE (5), ALSO TUMOUR IN ABDOMEN THAT TOOK PART OF BLASDER AND BOWEL, and too make worse I had sepsis a number of times.

I THINK YOU ARE REALLY BRAVE AND I LIKE YOUR PLANS, I’M HOING TO BE ABLE TOO HAVE A CHANCE XMAS IF DR’S ALLOW TO SEND XMAS WITH SISTER WHO LIVES WINTER IN SVALBARD I WANT TO SEE NORTHERN LIGHTS! 

I THINK THE UNKNOWN WITH CANCER TREATMENTS IS SOMTIMES WORSE THAN THE TREATMENTS AND SCARE STORIES FROM THOESE THAT HAVE WATCHED BUT NOT BEEN THROUGH! 

DO YOU HAVE MUCH SICKNESS? EVEN AFTER MY CHEMO FINISHED FROM LAST TIME I AM STILL OM METHADESAONE 0.2, MALOXON, omprezole,+buccal tablets and serotonin, I HAVEN’Y BEEN ABLE To eat solid foofs since last chem & live on compact food suplement I LIKE COFFEE FLAVOUR BEST I HAVE ABOUT 30 CRATES IN ROOM IN HOUSE, bannana, strawberry, vanilla& Fav coffee I can’t swallow solid foods or tablets all meda are liquid or i.v.

Paul1969
Posted by

Hi Kirsty04

How are you getting on? The drugs will depend on what treatment you are having. There was a lot of chemo in my treatment but the hospital managed to keep the sickness under control with medication. Appetite was up and down depending on how I felt. fatigue was the main issue as the chemo built up in my system, so a lot of sleeping happened!!

Paul

What is a Community Champion?

You can speak to someone in confidence by calling Macmillan Support on 0808 808 0000 - 365 days a year 8am to 8pm It's free from mobiles and landlines. The friendly team are waiting to take your call.