Hi, I am wondering if anyone else has found they have had any other health challenges diagnosed since their blood cancer? The first half century of my life were really healthy and perhaps that is why I went into such shock when I was diagnosed with CLL. Since then I have had extensive dental procedures due to infections, ongoing urine infections, an irregular heart beat, chronic kidney disease, severe osteoporosis, skin cancer and ongoing shingles, it sounds as if I am falling apart, but I am not honestly. I have read odd articles that says there is a connection between most of these conditions and my CLL. I would be interested to hear from others.
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Hi Erica, I’m sorry to hear of all the things you are dealing with. My health issues have got more complex because of the treatment that I have had, and still continue to have, to control the CML. I am thankful to still be here and very glad of my different teams who are working together to support me, but it has meant that there have been new challenges. So I don’t think it’s the CML causing it, but more the medication and treatment side effects.
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Hi Jo, I really think the after effects of treatment need talking about more, people do not realise about the lasting effects of them. Take it steady.
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I believe that each person’s experience is as unique as their blood cancer. Even those people diagnosed with the same blood cancer as mine (Hodgkin’s Lymphoma) have different experiences. What we do have in common is that those with blood cancers, whether on Watch and Wait, having treatment, or in remission, face complex health challenges for the rest of their lives. I may be wrong, but those who have had other cancers do not seem to have the same problems. I had immediate side effects (hearing loss, fatigue and anxiety/ panic attacks) and then more and more health challenges as the years have gone by (heart, thyroid, gynaecological…) Then there are the problems I have been made aware that I am more likely to encounter in the future. The cure is just the beginning
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Hi, and despite all your challenges you still give so much time and effort to Bloodwise and it’s cause, you area true star. take lots of care. Erica
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Thank you Erica. Those are kind words. have a good week
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Hi @Erica
I can sympathise with you, I was diagnosed with ALL at the age of 39. Up until that point I had been fit and healthy, I was always out on my mountain bike and going to spin classes.
I though once I had completed my treatment that life would return to “normal”, but it never has.
Chronic GvHD was diagnosed about 6 months after my transplant, I am now 11 years post transplant and am still dealing with it. I have Pericarditis, diabetes, osteoporosis, sclerosis of the skin, gout and suffer from chest infections in the winter time. I am on 11 different daily medications including steroids and ciclosporin.
7 years ago I did get off the steroids and immune suppression and then ended back in hospital with severe fluid retention, so had to go back on them again.
Now weaning off again but VERY slowly this time.
I have had to adapt the way I do things so that I can still enjoy the things I used to. For example I converted my mountain bike to have electric motor assistance so that I can still go riding with my friends.
As you say it does feel like you’re falling apart, but I’d rather be here with the issues than not here at all.
Just keep going and live your life as fully as you can.
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@Nickmarks57 Hi. I am pleased you have found a way to get around being able to cycle with your friends. I too have an increasing number of ailments…never sure whether they are age or treatment related…and gout was added to my list this year. Most of the time I am happier being here than not, but it does floor me when my body lets me down again. Take care
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thank you so much for sharing your experience with ALL with the forum and it sounds like you have had a difficult experience after your diagnosis at 39. We haven’t had much discussion about chronic GvHD on the forum and I was wondering if you were interested in sharing and offer advice to people who are experiencing the same situation?
Gosh Nick, you have been through a really tough time, we really are complex beings and I realise I have to take responsibility for explaining to a consultant what other conditions I have and what medications I am on. What a brilliant, clever idea to put an electric motor on your mountain bike, I like it. Take care.
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@Pisces56 I have the same feelings regarding whether the ailments are age or treatment related. It does feel a bit like I’m running out of bits of me to break!
You just have to pick yourself up each time, work out how to deal with it and carry on. I’m lucky in that I have wonderful family and friends who are there for me and help to keep me going.
Take care.
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@Erica I was a bit unsure about whether the electric motor would do what I expected, but I needn’t have worried. Not to put too finder point on it, but it has transformed my life. I’ve always been a keen cyclist, but was beginning to think that those days were over. I’m now looking at getting a purpose built electric mountain bike with all the latest features, so that I can go out for longer.
Definitely agree about explaining things to your consultant. Mine is really good, she listens and involves me fully in what to do about everything, so I feel in control.
I think having a positive attitude helps, and sometimes you just have to find a different way of doing thing.
Take care and never give up.
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I have just started to get into cycling and it really is so much fun. I would love to try long distance cycling and possibly buy a bike with a decent motor on it. also, how long have you been cycling for?
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I learnt to ride at the age of 5.
Did some touring in the UK and some road time trials in my teens and early 20s. Then had a break for a few years where I didn’t rude much other than for transport. In my late 20s I discovered mountain biking and now that’s what I do other than riding to work and to the shops sometimes.
The eBikes are great even for fully able riders as they enable you to go further, climb steeper hills etc for the same effort.
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Sounds like you have really gotten involved with different types of cycling. Have you considered or participated in the London to Paris cycle event? It recently just finished last month.
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Yes I just love cycling. I have done a few races in the past but I don’t really have that competitive drive.
I haven’t taken part in the London to Paris ride. Not sure if eBikes are allowed and I would probably have to get a road bike. Have thought about it though.
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@Erica you both are legends!
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Hello @Nickmarks57,
Thank you for sharing your thoughts on the London to Paris cycle. We do hear from some people that it takes quite a bit of training and drive to participate.
Since the temperature has fallen, have you been cycling in the snow?
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I haven’t been on my bike for nearly two weeks due to some new health issues that I’ve had to deal with.
However, I am hoping to get out this weekend, in the snow if it’s still around. We haven’t had much.
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I love cycling too and haven’t done that much since my diagnosis, my husband does a lot and in our area there is quite a good cycling community. There are also a few charity bikeathons which I have managed, it may be worth seeing if there are any in your area? I know there are Bloodwise ones all over the country, some organised by local Bloodwise branches? Which part of the country are you in?
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