I am on my eighth week of chemo for myeloma. I’m doing VTD. My week has fallen into a pattern: injection on Friday, weekend ok, Monday and Tuesday barely able to stay awake, rest of week aboht 50-50. I’ve never know tiredness like it, heavy eyelids, can’t concentrate on anything, sleep for six hours during day and 8 at night, can’t engage with family, no energy etc… I’m guessing this is the cumulative effect of the drugs but is it normal? My CNS was asking if I am able to work!! I am barely able to get out of bed. It’s really getting me down and I feel guilty for the kids and my wife who are having to pick everything else up.
Anyone else have this problem?
Hi @md67. Sounds like you are having a rough run off it at the moment. I can’t comment on your treatment but I’m sure somebody will have been through the same and will be able to offer their advice. What I would say is please, try not to give yourself a hard time. Everybody reacts differently to treatment and you mustn’t compare. Each journey is individual. Have you spoken to your wife about how she is doing? I get the feeling guilty, I really do. But remember, I’m sure you’d be doing exactly the same for her if she needed you to. You can pay her back when you’re stronger please take care and use the support line, as well as posting if you need a chat, advice or just need to offload.
@md67, what you are describing sounds really debilitating.
What did your CNS say when you described what is going on for you?
Although it sounds as if you are doing so I am a great one for keeping some sort of diary as it really shows the cycle you are describing.
It must be so difficult not being able to support, engage with and help your family, what I have found is unless I tell my family and friends how I am feeling they will not be able to understand and probably mis interpret my demeaner, mood, feelings and actions. I know I retreat into myself as well.
We are sometimes the ones that really understand each other so please do post on here exactly what it is like to be you and @Nichola75 has given you the support line details if you would like to talk to someone,
Be kind to yourself.
Hi again @md67. I thought this link might be useful for you to have a look at. It’s Blood Cancer Uk tips and advice on managing fatigue: It talks through practical tips on what people can do to help themselves and also includes some blogs about the subject from some of our lovely members of our blood cancer community.
Blood cancer and fatigue | Blood Cancer UK
Once again, take care
@md67 …keep the faith - I am truly lucky - I have finished 6 cycles of aggressive chemo, and have been told I am cured of my classic Hodgkin lymphoma - in this crazy year of 2020!
I am sure you will get through it, and I hope the kindness you will find in bucket loads on this forum, will help you in the same way it has me.
At times, in just the same way you have explained, the feeling of exhaustion and lethargy was so utterly overwhelming - especially if you were in the main, pretty active!
My advice now I am out the other end - you must listen to your body; eat regularly - even though you may not have an appetite (cake is an easy satisfier!); keep necking the water!
When you add in the natural feeling of guilt at being so useless at addressing anything that might have been ‘normal’, you have got to find a way to accept that yes - it is most definitely a side effect, and there is very little to counter it. If you need to sleep - sleep!
I learnt very quickly, the chemo uses many many calories. That in itself was difficult to understand based on how inactive I became because on the same feelings of exhaustion and lethargy - until it clicked; it is the cure that is so debilitating - the exhaustion and lethargy may continue, but once you understand the importance of replacing the calories the cure demands, hopefully, like I found, you may gain a little more control and understanding of how this cure will continue to ‘cumulatively’ build in terms of the side affects you describe.
Work; I think any reference to work from your CNS is probably to try and help you keep your mind busy! I have always worked for myself from home! I know I am fortunate with that. If you cannot work - for whatever reason - find something to keep your head busy (4 series of Battlestar Galactica helped me - lol! BBC iPlayer)!!
I wish you well my friend. You are not alone. You are not letting your nearest and dearest down. You will come out the other end.
Hi @AdamM. Gosh, this was really amazing to read and offered some great advice and support for @md67, which I’m sure will help in so many ways. You’ve been on that journey and your story is invaluable to anybody going through the same thing.
I so happy that you have received some good news - as you said - in this crazy year! How are you feeling physically and emotionally, and your family? Why are your plans for Christmas?
I echo what you said about the forum offering so much support. Sometimes I don’t know where I’d be without it!
You take care @AdamM, and please keep posting. You write so well! !
Although you are so eloquent @AdamM and @Nichola75 says it so well I also wanted to add to @md67 you say you are on your 8th week of chemo, that really does take it out of you so much physically, emotionally, medically and organisationally practically and those are often things that cannot be seen by others. Your body is working so hard to fight and treat your condition you will be completely fatigued now and it will take quite a while to build up again. I call it replenishing your batteries. That is natural and perhaps as many of us do beating yourself up as well actually just compounds it.
Also eating food and drinking water will help fuel the body to build our strength.
Take care and as a family spoil yourselves.
I can empathise. I have CLL and after 4 cycles of chemotherapy in 2019 went into remission late in that year. During this time I felt ok but this year I’ve felt ill, like you total exhaustion. Reported this to my consultant who tells me bloods are ok and can’t help and I get same response from my GP. Sorry i can’t help you but am also interested if anyone can. Should add that I’m male aged 85 so maybe it’s just old age but it’s the change over a year that’s really got to me.
Hi @Catcher and welcome to the group. Sounds like it’s been a tough year with the exhaustion and not feeling well, especially if you felt so well during treatment and initially, in remission . I can imagine it wasn’t what you were expecting! It’s a shame that your team can’t offer you any advice. Always good to post on here so others can learn from your experience and you from others. Have you got people around to support you? Don’t forget about the Blood Cancer Support Line. They may be good to talk things through as well. Please let us know how you are getting on
Hi @Catcher, welcome to our forum and you have shown the value of it already by responding to someone as you did.
I can really understand your concerns and I think it is so difficult because every ache/pain or lump/bump and my first thought is that it is my CLL. The main thing is, as you did, to check your symptoms out with your consultant and GP. I cannot tell you if the responses you received were correct or not.
However that feeling ill and total exhaustion all the time that you and @md67 are experiencing must feel really debilitating and scary.
For me it has been a weird year during Covid times shielding. I am not getting what was my usual fresh air and exercise and I am in a different routine and shopping on line and staying in our flat. I am also sitting in front of a screen more and Zooming is the normal suddenly. I am really missing social interaction, laughs and hugs from family and friends.
@Nichola75 has given you good advice, please keep posting, I would like to hear more about you, take care and stay safe.
I finished my eight rounds in November for exactly the same condition. I totally empathise with you as I suffered in the same way. Although I haven’t been getting the sleep in the same pattern as you. I was and still am sleeping when I can apart from when I was laid up at the weekends and that’s all I seemed to do. It’s a case of hang on in there and since my chemo has stopped in the last two weeks I’m back to where I was when I started the chemo. Dropping off at ver pay odd moments thinking my husband has just spoke to me and he either isn’t in the room or just sitting watching something in the television. The meds play tricks haha. I know what you mean about feeling guilty but please try not to look at it this way if you don’t do the sessions you may not be able to do the things you want to do. Talk to a professional about your concerns don’t put it off. Take good care of yourself and stay safe. Tour family too and I hope you can all have an enjoyable Christmas xx
Thanks so much for the response - i really appreciate it and send you all my best wishes
Thank you so much for your response. I can’t tell you how helpful I found it and knowing there are people like you around is what makes this forum so important and special. It was so kind of you to reach out.
Take care and thank you again.
Hello there I too had VTD from July to December 2018 and then ASCT in February 2019. I remember feeling as you do now. Its like wading through treacle! Its a long slog thats for sure. I too hung on to the idea of returning to work but wasn’t quite sure how I would have managed if I had. I didnt in the end because I had quite a bit of bone damage and ended up in a body brace during a very long hot summer.
But for all that I am now very well and if it wasnt for blooming Covid I would have been doing all kinds of exciting things in 2020!
Wishing you the very best on your myeloma journey. Its not what any of us would have chosen but life throws stuff at us and we find a way through.
Hope you have a happy and safe Christmas with your family. There’s light at the end of the tunnel!
Just read your post yes its awful, stay strong and positive and of course stay safe. With you all the way m8 #FightTheFight