Long Term Effects of Chemo and Total Body Irradiation?

[Dan2021]

Hi, I’m a 41 year old male who first had AML in 2009 when I was 30. I had 9 months of chemo over 4 courses and I went into remission, got my strength and fitness back and returned to work.

In 2013 I relapsed and this time I had chemo, total body irradiation and a bone marrow transplant over 6 months. I again went into remission but I’ve never ‘recovered!’

I have chronic fatigue, osteoporosis in my back, hip and neck, diabetes, acute kidney injury, GVH in my intestines, significant muscle atrophy and inability to build and maintain fitness. I suffer with depression and I’ve lost lung capacity meaning I get out of breath easily. I’ve had cataracts in both eyes removed and new lens replacements and laser treatment on a regrown cataract. All of these things came as a result of my cancer treatment.

I feel like I’m 81, not 41. I walk with a stick, I have felt exhausted now for 7 and a half years, no matter how much rest I get. I no longer work and I can’t imagine it will be possible to work again as year on year my body feels like it’s giving up on me more and more.

I’ve read numerous articles about long term effects of the treatment I’ve had and they all seem to conclude that patients recover to ‘almost’ pre treatment levels of health and fitness with certain conditions developing over time.

My question is this; does anyone else have similar problems to my own? I’m under 8 different hospital departments and each time I say I have chronic fatigue (which was actually diagnosed in 2019 by a tropical diseases consultant) they still send me for a thyroid blood test (which I’ve had 4 now in 18 months and my thyroid levels are fine!) or they tell me to try ‘moderate exercise’ which does nothing but wipe me out!

I feel like doctors are unable to ‘think outside the box’ and that maybe the treatments I’ve had, have had an unusually greater negative impact and effect on me than others, so they assume I’m just being lazy. But I’m really not. I’d love to even just stack shelves in Tesco. But I can’t stand more than 10 minutes without pain in my neck and back and I feel like I’m falling apart.

I’d appreciate anyone’s feedback on this, especially if you find yourself in a similar situation, thank you!

[Robson]

Hi Dan
I’ll start with a caveat. Everyone is different; every cancer is different. Obvious really. After all the cancer is a malignant part of you.
I would suggest most of your problems are as a result of the long term use of steroids?
However, I really don’t know any of my cohorts who have not found their run in with cancer as life changing. You just have to learn to live with it, safe in the knowledge that it is better than the alternative.
For all the reasons in my caveat the amount of “life changing” that treatment delivers is different for each person.
I distinctly recall, when questioning my consultant on the side effects of a build up of iron in my body following repeated blood transfusions to up my flagging haemoglobin whilst on chemo saying “don’t worry about that now, that is the least of your problems”. Nine years on and all of the issues that I live with have nothing to do with the ALL I was diagnosed with. But without the treatment for which I am still physically and mentally paying for, I would 100% be dead.

It sounds like you’ve been dealt a rough hand and for that you have my full empathy. But “poor you” really is of little help. No?

[Erica]

Hi @Dan2021, firstly what you are experiencing sounds really debilitating and I feel for you.
I was very healthy for my first half century. Since my diagnosis soon after with cll in 2003 I have been lucky enough not to have any treatment.
Since then I have had to have multiple teeth extractions, skin cancer on on my head, that has now reoccurred, an irregular heart beat, chronic kidney disease, osteoporosis (I have lost 5 in in height and fractured multiple vertebrae), curvature of the spine, a hysterectomy and bladder prolapse, suspected breast cancer and re-occurring shingles and of course fatigue. I joke that I have been under every department at my hospital apart from maternity.
What issues are related to my cll who knows, I have heard of others with similar conditions.
What I have come upon on many occasions is that specialists are specialists in their own field and that departments do not usually interact with each other.
I have realised that it is my responsibility to inform them about me holistically.
I don’t know what I am trying to say and I realise your case is absolutely completely different but I thought I would just let you know my experiences.
We are very complex beings and I feel we need to be looked at holistically.
I believe there is a thought now that with fatigue it can be helped by suitable exercise appropriate to the patient.
We are here to support you and if you would like to talk you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk.
Please take lots of care of yourself, we are all special, unique people, please let us know how you are getting on.

[Dan2021]

Hi Erica,

Thank you for your response, it sounds like you have really been through the mill! I hope at the moment you are doing ok!

I know what you mean by different departments only knowing about their own little part of my overall health. A few years back I priced a 2 page document with all my medical history, previous and current issues, the effects, what meds I’m on and any relevant upcoming tests. I update it every time something changes.

I did this because I would see a different doctor every time I’d go to an appointment, who didn’t know me, or have any idea of the extent of my health problems and I was sick of repeating them over and over.

It makes it a lot easier to just hand it over at the start of an appointment. It also helps me remember what ALL my health problems are and what my history has been, as there’s been so much I sometimes forget and when you don’t get to see a doctor in that department again for 6 months, things slip by and you don’t get the tests/treatment/referrals you need!

[Dan2021]

Hi Robson,

I got over the ‘poor me’ finally a couple of years ago after a few years of counselling. Getting AML twice, my ex breaking up with me because she couldn’t cope seeing me go through treatment, my two friends dying from cancer around the same time, losing my job, my chance to have kids and all the health problems the cancer treatment caused really messed my head up for several years and I got to a very dark place.

I’m at peace now with how my life is. It’s not going to get better. It’s a matter of living within my restrictions.

The doctors didn’t explain to me the consequences of treatment when I relapsed. I asked but they just didn’t say how bad it could be. In fact a couple of years after, they told me that they hadn’t been completely honest with me as they didn’t want me to not go through with the treatment. That wasn’t their choice to make. If I’d known then what I know now, honestly, I’d have held my hands up, thanked the lord for the time I’d had and bowed out gracefully.

I asked if anyone else had any long term significant effects as doctors have brushed off everything I’ve subsequently been diagnosed with (prior to finally getting referrals and diagnosis) as ‘nothing to worry about.’

Their apathy has resulted in my current conditions being worse than they needed to be as they were caught later than they could have.

I have my next Leukaemia Clinic appointment in a couple of weeks, with a new doctor in a brand new hospital, so I’m trying to prepare myself with as much information as I can find, in preparation of a doctor trying to brush off my concerns again.

Thank you for your reply

[Erica]

Hi @Dan2021 and @Robson thanks so much I really appreciate your response @Dan2021
I know we are appointment veterans but I am writing this for others who might not be.
I find it is worth ensuring that all paperwork you might need to hand over at a medical appointment, like @dan2021 medical history document, list of medications etc. is headed with your name, address, date of birth and NHS number so that it it gets mislaid it can be added to your file at the hospital.
Please let us know how you get on at your leukaemia clinic appointment @Dan2021

[Robson]

Dear Dan,

It is good to hear you have moved on from self pity - we’ve all been there unfortunately.
In my opinion it is absolutely vital to be able accept your plight in order to effectively fight for survival.
Of course people around us care about us, but it is not their back that’s against the wall is it now?
If we are not prepared to fight for our health because we wallowing in self pity, we can hardly expect medics and other health care services to go the distance we need.

Over my 8 years on this journey (I don’t think I can remember life BC? ) I have met many with a similar CV to yours. Wives, husbands, sons, daughters, brothers, and sisters, friends and even parents who cannot hack it and effectively abandon someone they claimed to have feelings for.

Steroids and I do not get on at all well. I recall whilst on one of many high dose, sleepless courses of this drug saying to my long suffering wife “why don’t you just leave me. If I was you I would definately not be hanging around putting up with this.”
What a horrible, unreasonable thing to say to someone who loves and has been caring for you? Steroids made me a very selfish nasty person. Thank god she stayed and didn’t listen to my advice!

Homes taken by mortgage companies, employers letting the sickies go. Yes every member of this club, that not one of us chose to join has their own story.

When I was a very small boy my grandfather sat me on his knee. I was having a bad time over something or another. He had served on the North Atlantic convoys during the war. “Buddy, if your ship has been torpedoed and sunk and you find yourself you in the middle of the ocean in freezing water drowning, knowing you are dying alongside the rest of the ship’s company is of no consolation to you”. Wise words.
However in our case whilst perhaps it doesn’t really help to hear other people’s tales of woe, it is without question cathartic for the teller and does make us realise that life has not just picked on me for “specialist treatment”; or simply there is someone worse off than myself therefore I am blessed. Harsh but true.

Moving on.
I was and continue to be under Moorfields eye hospital for occular GVHD. Two years post transplant I was told I had cataracts in both eyes. Why? I was 54. Even my mother who was then 90 hadn’t developed them at that age.
Long term use of steroids I was duly informed.
The next time I saw my consultant, whom I happen to have a lot of respect for, I cornered him and demanded to know why he had not told me that steroids could give me cateracts. He replied in a very pleasant manner “because you didn’t ask”. But, I persisted how can you expect me ask unknown questions? “If I had volunteered to you about the possible side effects of chronic GVHD would you have gone ahead with a stem cell transplant?”

That was a bit of a light bulb moment for me. So that’s the way it is I thought. From then on I became a “professional patient”, probably in truth a bit of a pushy pain in the arse. Being a patient in our position within the NHS is a highly competitive business and at risk of repeating myself, if you don’t look out for your health who the hll else will?

I hope you can take on board my message in the spirit with which it is intended.
Good luck with your new hospital and haemat-oncology team.

Remember, question everything you are told no matter how trivial and push hard for an answer. Much as I have heaps of respect for them, it is my experience that doctors are in general poor communicators.

Regards Robin.

[Franko]

Hi @Dan2021 I can relate to the multiple department syndrome. I was quite often seen by people from different teams when I was in hospital and they never compared notes so I’d often have to answer the same questions several times. It can be very frustrating but I’m glad to see that you’re adapting. Make sure that you tune in here if need to talk. We’ve all been through many challenges

[Quentin]

Hi Dan2021
I just wanted to reach out and thank you for sharing. I went through AML, Chemo, Stem Cell Transplant 3 years ago and am in glorious healthy remission. But am hoping I don’t follow your relapse story and subsequent problems.
You are a strong person to take all that has been thrwn at you - and a strong person to share it with us on the forum.
Like you and Robson, I had a horrible reaction to steroids. They are nasty chemicals and overused in my humble opinion.
I also align mostly with Robson ''s tough advice. When you’re at the bottom of the pit (it sounds like you are close !) t, then the only way it up. Climb towards the light.
This means you have to CLIMB (which is very hard, especially when debilitated permanently like you are) I also align mostly with Robson ''s tough advice. When you’re at the bottom of the pit (it sounds like you are close !) the only way it up. Climb towards the light.

I tried really hard in my dark days to count my blessings and not my pains. Friends, comforts,TV, a Medical system that tries to help etc etc Easy to say - difficult to do. But I have tried really hard to make it a life habit. And it really really helps.

I feel for you buddy. But you have shown how strong you are - and you can get through this.

The only way is up.

[Dan2021]

Hi Quentin,

I’m glad you are doing well. I’m not in a dark place anymore thankfully. But it took me getting there and finally seeing a great counsellor to finally come to peace with my situation.

I was diagnosed with PTSD and depression 2 years after my relapse. I can tell you now and anyone else that reads this, unfortunately it’s not a matter at times to just reach for the light, shake the darkness out of you, shrug it off, man up, don’t pity yourself, just smile! It took hours of deep, emotional discussions to work through a lot of trauma.

I’m glad your experience has been better for you. My original post was in no way me trying to get attention, making a cry for help or claiming woe is me!

I own the issues I have! I’ve been to the literal edge and I’ve climbed back off it!

My post was only to see if anyone else had faced similar long term issues as all the articles I have read talk only about the ‘general’ improvements in health over the first 10 years. But obviously there must be a minority that aren’t like that and it was their evidence I was seeking.

As I believe in being as prepared as possible going into an appointment, especially with a new doctor, as too many have failed me in the past and I fight my corner these days!

I wish you continued good health and recovery. But I would also advise that you keep on top of the tests you should be getting, particularly re your levels of testosterone, kidney functions, iron levels and thyroid.

My hospital eventually admitted to have given more consideration to female patients and the effects treatment had on their hormone levels than male patients and their inaction lead to certain problems I now have being greater and having developed sooner.

All the best!

[Erica]

Hi @Dan2021 I’m so glad that you found a great counsellor, I did as well and it really helped me.
I often do not realise how low I have got till I have started to clamber out.
I also prepare myself for all appointments because my mind goes blank when I walk into anywhere medical. It has taken me years but I now have a voice and fight my corner too.
Does anyone else relate to our experiences?

[Lucy]

Hi there, I’ve been trying to find more on chronic GvHD, long term effects of nasty steroids etc etc but your right there isn’t much around. It’s for my husband who 3 yrs on from a life saving Stem cell transplant is still pretty much on the sofa, very thin, very fatigued, suffering basically. He says he’s surviving not living and seems to be down that dark hole at the moment. And I am trying to pull him up ‘YES YOU ARE A SURVIVOR’ but there’s not much else he feels he can do. His consultant is very dismissive of his GvHD gladly puts him on steroids that this time seem to have made him worse and three weeks later was in hospital for a week. Some effects have lessened such as the vomiting & diarrhoea, not as confused, the painfully swollen legs & feet, his skin has settled and his chest infection has cleared but his eyes are still sore no drops seem to work and although he’s eating more and it’s staying in he isn’t putting weight on. He’s so fatigued it’s scary. Until this thread we had no idea the steoids can potentially affect the eyes, we just thought it was all part of the GvHD as the consultant waves his hand to dismiss the things he raises. All part of it he says. But how much longer can he take it, will it ever get better? No-one knows or no-one wants to say.

[Erica]

Oh @Lucy I am so sorry to hear about your husband, obviously he has got to want to do it but does his GP know how bad he is and how his life is?
Perhaps a daily diary, written by either or you, of how he feels he is himself or you see him and his symptoms, energy, mood etc might help as evidence. Perhaps he could ask his consultant or GP for a second opinion.
Secondly, how are you, it must be horrible for you seeing him so debilitated and in a low mood when all you want to do is make him better, which of course you are powerless to do. It also seems a very isolated life that you both lead. Do you have any support or anything you do.
What I have realised is that it is so important for him and you to have somewhere where we can say how it really is for us without someone taking those feelings away from us which I find family and friends naturally do and that is why this forum has been such an important place for me.
We are here to support each other and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
Look after yourselves and if you can have the odd treats of any kind. One of my guilty pleasures is a soak in a hot bubbly bath and I love my music.
Please keep posting as I would like to know how you are both doing.

[Lyn99]

@Lucy I don’t know the medical details for this type of blood cancer but I was really moved by your story. It seems like you haven’t necessarily had the after support that was needed once the transplant was completed. Three years is a long time to be surviving, not living. You have to have a quality of life both physically and psychologically to look forward. This must be so incredibly difficult for both of you in this horrible limbo. It is encouraging that some symptoms have reduced, maybe it is just taking a long time for recovery to really get established. ME comes to mind where people suffer chronic fatigue for prolonged periods of time but very slowly recovery does happen. Your husband’s body has been through some pretty drastic onslaughts and maybe just needs extended time to heal. You need to look after yourself too as this situation must really take its toll on you emotionally, seeing someone you love in this situation. I wish I could offer some words of wisdom to help. @Erica is right in that it has to be finding the right medical support to move forward, even if that means a second opinion or paying for a one off private consultation with a specialist, if that’s an affordable option. I wouldn’t have had my diagnosis without doing this.
Hugs to you and your husband and I hope that things improve for you xx

[Lucy]

Thank you both.
my husband never wanted to talk/see anyone else he would always wait for his consultants day in the hospital to go see him rather than another consultant meaning he’d delay being seen to. I would end up calling in or rushing him in to triage. We no longer have a specialist nurse not since the transplant actually. Should we still have one?
But this recent stay in hospital has really got to him so I think I might broach the subject of a second opinion. His GP has never been in touch since referring him for a suspected hernia. Turned out he had AML & ALL so again he doesn’t have much faith in others but now he might have had enough of his consultants dismissive attitude. Thank you.

[Lyn99]

Hi @Dan2021, I just came across your story and wanted to ask how you are? I don’t know how you managed to deal with the horrendous things that came your way. To be able to deal with and accept all these things makes you a pretty inspiring person to me. I completely understand when you said that you could have bowed out gracefully if you had known what was in store. Quality of life is very important to the human psyche and an overload of adversity so easily tips the balance. Did you ever manage to find the right information and medical support to improve your symptoms? I do hope so. I often had said to me that it’s ok not to be ok and I think this is more than reasonable in your situation…Hugs x

[Lyn99]

Hi @Lucy, was just thinking about you and your husband and wondered if you were able to convince your husband to look for a second opinion. I can imagine it’s a huge effort to even get ready and have the confidence to see someone else when he feels so weak and poorly but it has to be worth the effort in the long run. I guess someone may even be able to do a phone consultation if that would help. I understand about not having faith in GPs, mine completely missed my myeloma diagnosis with a comedy of errors. As I mentioned before it was only when I had a private consultation that it was found and treated then by the NHS so finding a GvHD specialist may be the way forward. I hope that the small improvements are continuing, keeping food down will help the healing process further. Look after yourself too as the strain of someone being so reliant on you is tough even in a loving relationship. Xx

[Lucy]

Hi Lynn, thank you for your message. We have talked about it or rather I have and he has shrugged but this is what he’ll do…he’ll mull it over and then when I try again he will say if he’s thought about it or not. I tried to find a GvHD specialist online but didn’t really get anywhere and I spoke to his Mother who has a private blood specialist, as she has myloema. (Apparently its just a coincidence they both have had a blood cancer no-one has ever wanted to say any more about that). And she doesn’t think a second opinion is needed so that didn’t help. So I’m thinking a first step is to try to encourage my husband to be more pushy and ask for more information and referrals. He was supposed to have been referred for his eyes and have had an echo quite some time ago now. He has a high temp again and is starting to sound chesty too…his follow up apt is in 2 weeks tho. I might see if I’m allowed in now (had to wait in the car park before due to Covid although they let me in when he was admitted.) As I am happy to be pushy for him and will tell the truth when he can gloss over things. But I’ve been wanting to give him some responsibility you know some autonomy over this - his recovery. And in the past he hasn’t always appreciated me ‘telling on’ him. It’s s difficult one this line I have to tread because it’s not just his recovery we are all in this together, me, our children our mother’s our friends and family.

[Lyn99]

Hi @Lucy I see how difficult this is. I’m sorry that you haven’t had the family support that would have helped. Sounds like your first step is a good plan, if your husband takes the responsibility to follow up referrals and to gain more info. that will certainly give him some control over his symptoms and recovery. Every individual symptom treated in a timely manner will hopefully be a step forward and will make him more comfortable.
It must be so difficult for you all as a family to deal with this situation. I hope you can get the current chest infection under control, looks like 2 weeks will be too long, so hope you have success getting him in more quickly.
The increase in Covid adds another layer of worry for all. I so hope that a more acertive attitude will help. Please keep us posted how things are going. Hugs to you x

[Erica]

Oh, @Lucy you are in a really difficult situation because as you realise your husband is responsible for how he deals with his condition.
If he is anything like my husband he puts his head in the sand and if I try to say something he says that I am trying to control him and will dig his heals in completely and do it his way.
Yes, I agree your whole family and friends are in this together and care so much for your husband, but it is so, so difficult that you are all so powerless.
All you can do is look after yourselves so you keep your strength up for whatever is in the future.
We are here to support you and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
Thinking of you loads, your husband is so lucky to have so many caring about him.