Newbie here.

Long-term recovery
1

Hi.

I’m new to posting on these forums, although I have been reading them for some time.

In January 2014 I was diagnosed with ALL. It was completely out of the blue, I felt very well, I wasn’t poorly at all. I first went to the doctors because I was losing weight, my gp sent me for a blood routine test and within a week I had my diagnosis. Being a seemingly healthy 30 something with a young family it was a devastating blow.

I was originally told I wouldn’t need a transplant but after 2 months in hospital on various chemo treatments it became apparent I wasn’t responding how the doctors expected. In early June, after my third month long stay in hospital, my consultant told me that my leaukeamia had actually not improved at all. It seemed a total waste of my seemingly precious little time left, being stuck in four walls, being given all sorts of treatment that made no difference at all to my condition.

My consultant told me there was one chance left before they would just try to prolong my life as opposed to cure me. He made it sound like there was one lot of chemo treatment left on a dusty shelf somewhere in the pharmacy and they’d try that just for the hell of it.

Happily though, this treatment did work, by the early part of July my biopsy results showed there was no leaukeamia left. A donor was found for me and eventually, mid September, I had my transplant for a unrelated donor found through Anthony Nolan.

From then it has been pretty much plain sailing. I was out the hospital and home a fortnight after the transplant. I didn’t really get any GVHD, maybe my skin felt a little dryer than normal but nothing serious. I actually returned to work part time around day 90 and even made the works Christmas party on day 101.

From reading other people experiences on here I feel very lucky for how I’ve responded to the transplant and all the related treatment. I was perhaps a little naive when I came out from the transplant. Taking public transport to my clinic appointments for example, but fortunately I didn’t pick up anything serious.

I am now looking to the future, later this year I am marrying my partner who was, and still is, my absolute rock. She went through every single part of the treatment with me!

Finding out you have blood cancer is something I wouldn’t wish on anyone. The endless weeks, days and even hours spent within those four walls while your receiving treatment, watching your blood levels fall and willing them up again, putting all you hopes of a future on a little bag holding a pint of some else’s stem cells, it’s certainly character building.

I guess I’m just writing this so if anyone else is going through a similar thing, there will be lots of ups and lots and lots of downs, never give up hope. It’s scary, it’s physically and mentally very hard and it never leaves your mind but in many many cases there’s a happy ending!!

2

Hi

Welcome to the forum and thanks for sharing your experience with us. It’s a great story and I’m pleased that you have made good progress to date. I’m sure your story will be really helpful for other people facing transplant and maybe those in their early days post transplant.

I’m sure all of us who have gone through transplant remember the many ups and downs along the way but with the support of those around us we can get through it. There are so many people doing their best for us not least Anthony Nolan who track down our donors.

It’s great too that you are back at work I’m sure that will encourage others reading these stories. I was older than you at 63 when I had my transplant almost 4 years ago, I didn’t have to go back to work but transplant was a cure for me also and with an unrelated donor. I actually met my donor with the help of Anthony Nolan. I can do most of the things I did before albeit a bit slower! A cold or virus may take longer to clear up but as long as you take action quickly you should be okay. Do be vigilant about hand cleanliness particularly when out and about, my wife pulls a hand cleanser out of her bag everytime we stop for a drink or food.

Keep in touch and update us with your progress, other readers will benifit from your story.

Good luck with the wedding plans.

Best wishes

Peter

3

Thanks for your sharing your story and experience!

I, too, had ALL and am in my 30s, although I was only 23 when I was first diagnosed and only had my stem cell transplant after relapsing in October 2013. I had a similar sort of situation when the conventional chemo everyone was hoping (and expecting, to an extent) to get me into remission failed; I was fortunate to have better luck with a more experimental immunotherapy trial that did get me into remission, to everyone’s surprise…

I’m now more than two years post-transplant and recently got a new job that is much more in line with what my priorities are these days – I’m feeling very lucky and hoping I might get a chance to meet my donor before too long.

Take care and stay well!
George

4

Hi. Thanks for the responses. It’s good to see other people who have faced a similar thing and have also come out the other side with so much positivity.

George, I too went on a clinical trial which my consultant said was practically designed for my exact situation, this unfortunately didn’t work at all. It turned out to be a conventional course of treatment that eventually got me into remission.

Peter, I know I was lucky being able to return to work so soon, I was going mad staying at home whilst I at least thought I was fit enough to work. I started back 3 days a week in December and worked up to full time by March.
Unfortunately I, along with the rest of the work force, was made redundant late last year. I have only just found a new job despite several seemingly promising applications and interviews. I know by law you shouldn’t have to disclose your medical history, but in practice, I was being interviewed by the people I would be working with day in day out so thought I had better mention it. After a very successful interview where the employers were making all the right noises I explained that I’d had leukaemia and the transplant. They asked me questions about it and seemed happy with the answers. They heard I’d had 1 day off poorly since the transplant and only 1 day off in the 10 years before. A day or two later I got a call to say I didn’t meet their criteria. Very very frustrating. Has anyone else any experience of this?

Steve

5

Steve,

Thanks for sharing your story, and having had ALL myself too I can relate to every part of what you’ve been through. Thankfully for me I was in remission within the first month of chemo, but I had two more months of progressively harsher chemo afterwards, just to make sure it was gone, followed by my stem cell transplant to make sure it didn’t come back.

At the age of 46 when I was diagnosed with Leukaemia I was at a high risk of it coming back, so the plan from day 1 of my admission was for a transplant and the hunt for a donor started straight away. After my sister was tested and found not to be a match, an unrelated donor was eventually found and the graft took very quickly following transplant. I was 100% donor within a short space of time. My blood group changed from O+ to A+ as a result of the transplant and an added side benefit seems to be that it has cured my hayfever as I haven’t suffered since!

I did suffer from skin GvHD which prolonged my recovery significantly as I was on immunosuppression until it had finally been conquered. This also meant that I was unable to return to normal working life (in the construction industry) as soon as I’d liked but thankfully my employers were very understanding and I had a phased return to work from about 8 months post transplant and I was able to work from home for the best part of another 12 months after returning to work.

It’s interesting what you mention about mentioning your Leukaemia at your interview and indeed whether that had a bearing on the outcome. I guess it’s difficult to say whether that was the deciding factor but it must be a worry I’m sure. It’s not something I’ve had to face fortunately but after a call recently from a recruitment consultant about a possible position I updated my CV and specifically included mention of the time I had off during my illness. It will be interesting to see whether anything comes of it and despite not actively looking to move I might be tempted to follow it through if an interview arises to see what the reaction is. Like you I’d be interested to know what reaction others have had when applying for jobs or at interviews.

Congratulations on your marriage. It’s not until something like this happens that you fully appreciate the strength of your loved ones and I for one appreciate everything my wife did for me during my illness whilst she tried in parallel to keep daily life at home as normal as she could for our children.

The third anniversary of my 100 day milestone passed last week but it seems like an eternity ago now. My life is back to normal and it all feels like a bad dream that never happened, but my outlook on life has changed and I live to enjoy every day and try not to let petty things get to me anymore. One thing an experience like this teaches you is that there are more important things in life that getting stressed at work or at home over insignificant things.

All the best for the future.

Steve

6

Hello all, my name is Anneliese and I am Patient Information and Support Manager at Anthony Nolan. I just wanted to let you know that I am currently writing a resource about work and transplant. I would love it to cover useful issues such as applying for new jobs. It would be great to have your input on this - if you’re interested in being involved with the project please email me on anneliese.levy@anthonynolan.org