Hi there,
I’m just wondering if there is anyone in a similar situation to myself. I was originally diagnosed with ALL in dec 2012, I was extremely unwell and they did not believe I’d survive the first phase of chemo (UKall 2011) thankfully I responded really well to the first phase and was in remission because of this they decided a SCT was not necessary and I continued on the protocol which was successful and I remained in remission for 8 years with no sign of relapse and no further health complications.
fast forward to October 2020 and unfortunately I had relapsed. Within 24 hours I was admitted to hospital and started on the first phase of chemo (ukall14) I was in hospital for 6 weeks and responded well to chemo and I was back in remission, I had a week home then admitted back into hospital for the 2nd phase. This was a very touch and go time, I was in for 8 weeks, caught covid whilst neutropenic, had various complications one being my blood count takes a long time to recover and I have too many anti bodies, allergic to platelets and I don’t respond to the transfusions. Chemo was stopped as it wasn’t safe enough for me to continue. During this time the consultants had decided that I would not be well enough to go ahead with the SCT and believed I would not survive it so they decided to treat me with blinatumomab. I’m currently on cycle 2 of blin and have 2 bag changes until I complete it and move onto the maintenance phase until March 2023, this is now the UK21 protocol. I am still MRD negative and have had no sign of relapse. My blood counts are amazing (better than they were when I was ill).
im just so scared for my future, I get mixed messages all the time from the docs. One minute I’m told they believe this will cure me and extremely optimistic, next I’m told well hopefully this should give you atleast 3-5 years and they’ll be other options I.e hopefully car-t will be available then (only eligible up to 25years old currently) or I’ll be fit enough to have a SCT.
Don’t get me wrong I’m extremely grateful to be in the position I’m in considering how unwell I was but I just can’t stop thinking about how long I have left. I have a 10 year old son who is my fight through all of this and I can’t bare him having to grow up without his mom. I believe I have PTSD from being in hospital I get extreme anxiety when admitted or the thought of it. I feel completely lost, alone and find myself shutting myself off from everyone as feel every days a constant battle in my head and I can’t escape from it. I had a psychologist but only had 2 phone conversations and she left the service and said I need to be referred again I waited 6 months for my first one. Has anyone else found other places that have helped ?
has anyone been in a similar situation and living a healthy happy life now? I know blinatumomab is a new drug and many aren’t familiar with it but has anyone relapsed and not had a SCT and recovered ? I just can’t bare the thought of going through all of this again :(
Thank you
E x
Hi E Ecmh and welcome to this corner of the Community, I am Mike Thehighlander and I help it around our blood cancer groups.
Although I don’t have ALL I was diagnosed way back in 1999 with a rare Skin Non Hodgkin’s Lymphoma..... a very long story short (see my profile) I ended up having two Allo (Donor) SCTs so I understand some of your challenges- but not all of them.
I have no answers for your various questions as although blood cancer is blood cancer..... the journey can be rather different but let’s see if any of the AML group are looking in.
The challenges of getting support at the moment is massive, but some thoughts...... do check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing and a lot of these services have moved onto online video support groups. I actually Zoom into a Maggie’s Monthly Heamatology Support Group and it’s great to talk with others and share the load.
Maggies have also opened up their one to one support sessions - the staff are amazing..... and again some of this is available on Zoom.
Also check this link to the Macmillan Buddies Telephone Service where you can be matched with another person who have walked the walk.
I am always around to listen and help as best as I can
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
((hugs))
hi Ecmh
Following on from the Highlanders reply I was also diagnosed in 2012 with ALL. I was lucky and went on to have a successful stem cell transplant in 2013. You can read my journey HERE-PAUL1969
Keep going and I am sure your positiveness will get you through the treatment and out the other side.
Paul
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.
