Hi Helen,
My journey started January 1st 2021. I had to call an ambulance to my house as I had started to drag my leg around behind me, my left leg and I had problems with going to the toilet in front and behind. I then half a day later became paralysed in legs and arms. It was found I had a secondary cancer on my spine pushing into my nerves in spine. I was then treated with really high dose steroids where I could not sleep for over a month or so, as I was so high. I then had radiotherapy on spine and chemo on spinal sack, then high dose chemo on bone marrow. I could no longer put weight on legged and had to learn to put weight on legs and to learn to walk again on zimmer frame. I was then released home in March 2021 for one month to try and put some weight on and strengthen my body to return beginning of May 2021 for my sct. I forgot to mention while in hospital first three months of year I got infection and sepsis while my neutrafils were at zero and ended up in intensive care and ended up as well with a pressure sore on my cocksysx ASI mentioned I returned May 2021 for my SCT and then returned home June 2021 where I spent my time recovering from all my ordeals. Everything so slow as my body had been through so much with chemo from year before, secondary cancer, radiology, sepsis, intensive care, pressure sore, sct, rebuilding new immune system, learning to walk again etc. progress was very slow getting my strength back and is still a long way off. I then got gvhd in January 2022 with such stiff legs I have hardly made progress on improving my leg strength. This gives a sort of summary of my journey so far. So 2 years I have not really been able to walk well.
Oh my, Dave, I’m shocked by what you’ve been through. I’m just writing a quicky now, have a clinic appointment this morning early. Need to get moving.
Thank you so much for sharing. It’s probably a bit difficult for you to see it all written down. Makes it more real.
Let’s stay in touch.
Helen
Hi Dave
Sorry for you that you’ve gone through all that. Lots of very frightening times. Words aren’t enough. I’m sending you compassion and kindness. Maybe you can take something from my story. I’m not comparing, just offering it so you know. I’m grateful that I wasn’t really very conscious in the very bad times, I wasn’t aware.
My journey started in 2019 with breast cancer. I was in remission and had got through it. Then I ‘had to have’ radiology.
The haematology profs for my leukaemia told me that it was the radiology from the breast cancer that gave me leukaemia. This fact doesn’t leave me cos I was told by my very good second opinion at that time that I didn’t need radiology at all but when I told the radiologist this he just told me, “no, you’re going to get it because we do it to everyone in your situation”. So I went ahead with it. And it gave me leukaemia and gvhd.
I was told by an old Prof when diagnosed in early 2021 that leukaemia is no longer a life-threatening disease, that after the sct I’ll be back on my feet as normal after 4 months.
There’s nothing we can do about it.
Let’s appreciate being the heroes we are. Let’s stay constructive and compassionate. Let’s enjoy the moments we can.
How’s the walking and standing?
Do you have a home help? Can you stand enough to make your own food? Who shops for you? Are you driving again now?
I’ll get off here,
Sending you positive energy Dave, from my heart.
Helen
Hello,
I’m 18months post sct and have chronic gvhd, currently skin and eyes, I’m relieved to say that my cancer related fatigue (CRF) has gone. I still don’t have energy or mobility to do much and walking is painful and stairs tortuous…
But all that said, I just stumbled on this fitness/exercise for geriatrics in you tube:
I did it holding onto a chair without the stretchy band. I quite enjoyed it.
Thought it was worth sharing. He shows you how to do it all sitting down too.
Let me know what you think.
I don’t think it’s appropriate if you’ve still got the CRF, the fatigue.
Hi Helen,
maybe worth seeing if you can get mri to check for Myositis, muscle inflammation.Rspecially if you are making no progress muscle strengthening, climbing stairs or moving into standing position from sitting.
Thanks Dave. I’ll mention it next time when I follow up with the team again on the meds suggestion.
Love
Helen
As normal, I am still struggling. Sounds like you are having a hard time to. I had my Ecp today and will do tomorrow as well. Not really too sure how much it is having on me at the moment, I know it appears to be more of a long term treatment for skin and to keep immune system dampened down to also help reduce the use of steroids. Been going almost 2 years now less 2 weeks and my skin hardness has not really changed at all, hopefully is doing more for you. I know our gvhd skin issues are different. You seem to have more blister type wounds that open up and need a lot healing, whereas my skin is very tight above and below the knees. It is strange if I sit my legs feel nearly normal ie not too tight, but of heat, bit of like nueropathy. If I stand from seated straightening my legs is very hard like I am re-stretching my muscles then I become like peg leg walking ie so stiff and I try to crouch but can hardly bend my knees then I tire so easily, this is why it does not just seem it is like gvhd skin I feel maybe I have inflamed muscles as well. When I asked doctor if I could take Rituximab for this is when he said maybe worth a try as seems to have good muskoskeletar issues success in gvhd. I had treatment for this last Wednesday but it takes time to start working. I guess I am a bit impatient. After having my condition for so long and deduced quality of life for so long. Hopefully I will start to see some results soon. If I could mobilise a bit longer and exercise a bit I would be so happy, but it may not work either. I had to take the chance on something like this otherwise I could be sitting here forever waiting for my gvhd to reduce or my immune system to calm down. It was a 6 hour treatment with a drip to deplete certain b cells and bring the immune system down a bit. I am just hoping I notice some difference soon. Unfortunately I have had no experience of treating gvhd skin open wounds so I cannot really offer much advice. I can imagine how difficult it is for you though. I hope that they all start healing better soon. Do you also have tight skin? Trouble bending joints?
Hello Dave
I can understand your description of standing up. I have that in my ankles. The skin is thick there and breaks/ rips when I move and stand. My physio said it’s like treating burnt skin, it gains elasticity when it breaks … but of course he forgot the last part of the equation… with burn patients, the skin can regenerate over time, whereas ours can’t, which means ripping and breaking skin to what end? It leads nowhere, it’s just painful. The muscle joint flexibility… I feel like my ankles are rusty, or fossilised when I get up after sitting down for a while, very challenging. Unfortunately I’m a bit dizzy now when I get up after a while too. Perhaps the answer is ..never sit down, LOL.
Anyway, the ecp apparently destroys gvhd particles in the blood. I go in for mine Monday Tuesday.
I’m experimenting with my skin care a bit. It was helpful to find out treatment is similar to excema. After the skin is wettened, only with water (I put oil in it though), only dab dry and within 3 minutes moisturiser should be applied to stop drying out.
I can’t use only water. I experiment with left and right foot, heavy and light cream/lotion etc. Also my Dr has given me different trial plasters/pads for me to see what suits. Different skin areas need very different treatments, foam pieces cut small and bandaged on, absorbent, drying pads to absorb wound leakage. It’s getting pricey cos I have to pay a contribution, so now I’m trying out chopping up sanitary products, pads. They’re absorbent too.
So Dave, I’m glad to be in contact again. Paracetamol is helping me. I’m taking about 4 a day. 4x500mg.
My flare up seems to be a bit coming and going, I never know how acute the pain (genital skin, mucous membrane, ankles) is going to be from one day to the next.
Take care. Try googling excema treatment on you tube. At least I got a feeling I could do something.
I’ll get off here. Thanks for being there. It helps.
Love
Helen
Yes the skin is tight, I have neuropathy too, bad at night. Everything gets worse when tired and or stressed.
Hi Dave,
Im really struggling, with this skin ghd. I don’t know how you’ve been coping. It’s realy incapacitating. I can hardly write this, I’m so distracted with the pain. Any recommendations? I’m in the clinic tomorrow for the ecp again. I’ll ask them about that med and the diagnosis.
Night night,
Helen
Hi Helen,
sorry you are suffering so much. We are both suffering so much from this horrible disease. I keep hoping for us both that we are just around the corner from things improving. However with this gvhd it is difficult to know where the corner is. For me I suffer from my immobility and hardly being able to walk, for you it sounds like your ankles and open wounds. Luckily I don’t suffer much pain as such or not so aware of it so I can’t really recommend any particular pain killer as such. I suffer massively mentally from my symptoms as it has taken so much independence away, and just a little progress would help me so much. Reading lots of posts it does seem many people get thier eventually. Hopefully we are getting to the time after our sct,s that the symptoms should start to get less and the skin hopefully get better. I have now been doing Ecp for a year now and I don’t really notice any positive changes to my skin, however I know it helps to keep flare ups down, keep steroids low and hopefully stop any gvhd spreadGood luck for your Ecp this week and remember it is doing you good in the long run. I have my 2nd Rituximab infusion on Tuesday, but am now not completely convinced it will change much for my skin. I think I have been telling myself anything will help to make me mentally feel better and have something to look forward to. At the end of the day it has a 50/50 chance of improving my mobility a little. The problem is all these medications have thier side effects.Time seems still to be key to recovery and being strong, however I know it is hard as it has been going on so long for us both. Normally our immune systems would sort these issues out for us, but our immune systems are still sorting themselves out. Hopefully they will soon get there. Good luck in your Ecp and hopefully your recovery speed will increase very soon.
Thinking of you
Thanks Dave .
The reminder for patience and trust.. belief it might get better is helpful and calming.
I’ll keep you posted.
Love,
Helen
Hi Dave, I’m getting the feeling I’m recovering a bit after my flare up. Didn’t take painkillers yesterday, a first, and could hold a conversation without them, quite special. I’m cautious, don’t want to celebrate too soon.
Let me know if those new meds are working in any way. And I’d be interested to understand what’s causing your immobility. Is it fibrous muscles and hard leather layers of skin which stop your ability to bend? Are you in pain when you try to walk, bend, stand?
When you talk about layers of thick skin I can fully relate.
Love
Helen
Hi Helen,
I am happy that you seem to be recovering after your flare I hope recovery for you continues to happen and you improve. I have to admit I am lucky that I have not seemed to have any flares since about last August when had a liver flare. However in last year and a half I have seen no improvement in my mobility my legs continue to feel like concrete, heavy and swollen and very inflexible once stood on them. What gets me is that they are more bendiblr lying down but restricted abut I believe dime to the tight skin. If I go from sit to stand and straighten my leg at the knee it is like I am having to stretch / tear my muscles for the first time. When I am standing and try to bend my knees I can only bend a little which is less than half the distance when lying down, and when I go upstairs 2 or 3 times a day I really have to pull myself going up with both hands and coming down I have to support my weight with both hands. I have not improved from this in last 18 months. I can only stand up for max five minutes and feel to tight, stiff and heavy and feel so fatigued I have to sit down again. I often used to walk 15 miles a day so this is a complete nightmare for me. My skin on my legs is not scaled or lichenous nor pigmented, the skin just feels tight. I am not really in any pain unless I have become accustomed to it. I believe I probably have muscular inflammation which is why I believe I am suffering so much it is not just a skin issue. This is one of the reasons I am taking Rituximab as it is known to be quite successful for muskoscelta issues although it has not worked in every case. To date I have had 2 infusions 2 week apart and I am 3 weeks out from the first. To date I have seen no difference or improvement so it worries me it may not work for me. I feel occasional tingling in my legs and think I may be improving slightly then days later I realise nothing has changed. False hope I think. There are medical papers that state you may start to see some improvement after 4 weeks but I guess as I am so impatient as I have been in such bad mobility now for so long I am getting desperate. So I guess for now it is still watch this space.
you sound in your tone more positive I guess this is because you have some improvement, I guess I would feel the same.. so all in all with my legs I believe I have fibrous / skin tightness above and below the knee but also muscle inflammation as I can’t believe tight skin only would cause me such tightness/ inflexibility. I do also have what feels like hard lumpy skin under my stomach and tightness around waist which I believe is just skin issue but not as worried about this I just would like to get a bit more nobility back so I can walk around my lounge to get some muscle mass back and not having to spend my life sitting down or in bed. Now we are in or approaching our third year after transplant let’s hope the gvhd symptoms get less as it is usually the third year symptoms generally start to reduce. So fingers crossed.
Hi Dave. That sounds horrible. It’s bad that you can’t be standing up for long. My physio said our skin is like burnt skin and needs to be bent, although causing ripping and pain, to get some elasticity back in it. But I’ll admit I’m sceptical, because burn sufferers have intact immune systems and their skin can build scars and heal whereas ours can’t. But I have a feeling that sometimes I walk better after a few minutes. It’s such a shame that you’re not strong enough yet to stand a bit longer. How’s the appetite going? That might help it when that picks up. Have you tried painkillers just to see if it enables you to be more mobile. All of our perception of pain is very very different. Mine is really wierd. For example, Paracetamol helped me when I had low blood pressure after the birth of my boy.
I see what you mean now about the muscle problem. That’s how you got that new medication. Mine is more skin and the muscles are wasting and getting fibrous because of lack of movement and flexibility Ithink. My ankles are also sort of fixed with odaemia which get worse after I stand up in the morning. It pulls the skin tighter.
I have a super GP and she said I don’t need gym exercises, just practicing going up stairs and getting up and sitting down in the chair. I have to pull myself up too.
I had a really good nurse in the clinic when I was on my 8 month stay. When I was in tears in pain and exhaustion trying to go to the loo, he praised me and said, almost like a cheerleader, " you’re doing great, this is it, this is exactly what will make you stronger". I still have his voice in my head, when I’m pulling myself up the stairs… he’s encouraging me.
Oh Dave, I’ll get off here. It’s really good to be in touch. Our 3rd year! Begs belief. We’re holding on well. We’re still here! We must be doing something right:)
Love
Helen
Hi Dave,
At last I’ve got the ointment that the dermatologist prescribed for the "hard sclerodermiform sheets of skin "
Instructions.. translated, "only for use on targetted, localised, not open, skin. Not big skin surface. "
It’s called …
Dimethylium sulfoxidatum diclofenac Natrium carbomer 50,000. Unguentum basale dac.
The chemists made it themselves, it’s a mixture to be made up by your pharmacist, not off the shelf. Be very cautious with it at first cos I think it might be very painful if I catch it on ripped skin.
who knows, It might help. I’m hoping. I just put it on now. Will let you know.
Love
Helen
Hi Helen,
I do really hope it starts to work for you and it helps you make progress. You also needed something to lift your spirits up. Let me know how it goes. I am having a bad day again as I still seem to be making no progress and the skin around my knees seems extra tight today around my knees making it nearly impossible to walk. I hope I get some progress with the Rituximab but nothing happened yet. Good luck
Hi Dave,
Just a quicky, I’m having a bad phase too.
Good to know you understand. I’m sending you kindness.
Love
Helen
Hi Helen,
I do hope you are feeling better. It is so hard. Just had my 2 days of Ecp and yesterday did not feel too bad after, today I am not so good and my mood has dropped again. Can barely walk to my kitchen but have to force myself however uncomfortable it may be as I need to eat something as eaten next to nothing today. No improvement in skin / muscles yet and now into 6th week after my first Rituximab infusion so starting to think it may not have Any impact on me so this is also getting me down as well. Have consultant visit tomorrow but not sure what outcome I want . I just wish I was making some little improvement to reduce my stiffness / tight muscles. I hope your new cream is starting to help.
Need to put that coffee off as currently not up to it.
Hi Dave
I wonder what your consultant said apart from be patient.
I’m with you very often.
Sending kind energy and getting the kettle on.
Love
Helen