[juliegrayParticipant]

my husband has just finished first part of CTD treatment and  will soon start being prepared for cell collection ,and then for the cell stem transplant, it’s a week since stopping treatment but he is getting periods of extreme tiredness, just wondering if anyone else has experienced the same, would be grateful for an comments thank you Julie

[graemeandrewarthaParticipant]

Hi Julie,

Having been through what your husband is going through and SCT my main recommendation is listen to your body. Do not fight the tiredness and if possible go for a lie down or rest.

My Myeloma came at a time when I could retire (67) which allowed me to rest etc. I dont know how younger people who may have to work deal with it.

We men do struggle  on thinking we can carry on as before but in many circumstances we now have to rearrange our lives and start to remember that it is possible that we cannot do everything we once did. I am lucky and have family around who can cover the little things that make my life that bit better when I am struggling.

There will be others on here who can give a different view especially if they know a bit more about you and husband. Say his age, does he need to work, any specific problems (mine was hip pain later fixed by a new one).

Hope this helps

Regards, Graeme

[juliegrayParticipant]

Hi Graeme,

‘.         Thanks for your reply, my husband Andy is 63  and like you was fortunate to be able to retire, and has said many times how he thinks about other people in the same position and having to carry on working,you are so right saying about you men finding it hard to give in. Andy has always been a very active person , and finds that total lack of energy difficult,but like you say it’s all about listening to your body, and it’s reassuring to know other people feel this tiredness as well. We to are so fortunate to be surrounded by a loving family and friends, and realise how lucky we are to have the treatments and the skills of doctors etc now available, wishing you well and everyone else dealing with myeloma or indeed any illness.

 

Your reply was so helpful

Julie

 

 

[kpParticipant]

Hi Julie,

Feeling tired and the weariness of fatigue are common problems during treatment phases for MM. Thankfully it passes although 4 months after SCT I have seriously tired days, usually after I have inadvertently over done it the day before. Listen to your body and adjust your activity accordingly is good advice.

Best wishes Karen

[janwParticipant]

Hi Julie

Unfortunately like others have commented, for some myeloma patients fatigue can be part of the cancer and as a result of the side effects of the treatment. There are some useful tips on coping with fatigue on this site under the downloadable documents as well as information on the myeloma beacon site. I know how your husband feels because fatigue can be so frustrating especially when you were active prior to myeloma.

Your husband’s current fatigue might be mainly due to his recent cycles of chemotherapy and the short term side effects of the treatment. Perhaps his blood results are slightly low and just need a little more time to recover before he starts to feel better. I know when I completed four cycles of CDT in 2010, I was completely shattered, constantly sleeping and could hardly walk any distance without being out of breath. My blood results indicated that I needed some blood transfusions which certainly improved my energy levels prior to SCT.

I’m currently on a two week break after completing four cycles of VCD treatment due to my blood results being very low, which are causing me fatigue, lack of energy and breathlessness if I undertake any activities. Unfortunately chemotherapy can be so harsh on your body. We are all individual as to how we react to the drugs, the levels of side effects which we experience and the time it takes us to recover from any treatments. Like others have said, the best advice is to listen to your body, rest when necessary and take each day as it comes. Your husband’s consultant will also do his/her best to ensure your husband is fit and well enough to undertake his SCT.

I hope his SCT goes well.

Jan

[jeff605Participant]

Hallo, all, I haven’t posted for a while, my middle daughter who I have mentioned before (she suffered a brain bleed a while ago unfortunately was finally overcome by the long term effects of her ongoing problems and passed away at the end of November, which although not a complete surprise wasn’t expected and needless to say was a big shock.
Life being what it is, at the same time I am feeling pretty fit, with improving blood results. However, I am finding that I am suffering from spells of extreme fatigue,such that often in the mornings I haven’t the strength to stand up for a shower! I often fall asleep at about 10.30 in the morning if I sit down, however the plus of this is when I wake up I feel fine and ready to go. It does seem connected to the Dex/ Revlimid regime, with variations though the course of the Dex week. I feel for others who suffer such fatigue, if you are or have been an active person it is so frustrating! However, the only way to deal with it does seem to be to let your body be your guide, sometimes life demands make this difficult, I know.
An aside, I have found it very difficult to maintain my positivity since my daughter’s death, and can only hope that time helps alleviate this.

• This reply was modified 8 years, 10 months ago by  jeff605.

[mhnevillParticipant]

Hi Geoff

Have just read your post. Like you I haven’t been on so often lately. So sorry to hear about your daughter. Even though not totally unexpected, never the less it must have been a real body blow.

Time will no doubt help, but will never take away the fact that she is no longer here to be loved and to show love. Do you have any faith to help you through? I take comfort in believing that death isn’t the end and that we are gathered into he endless love of God.

Glad your own results continue to improve. Hope you manage to store up some good memories in this additional time you have been given.

Best wishes.

Mavis

[jeff605Participant]

Hi Mavis, thanks so much for your kind thoughts, it means more than you realise for me to know that there are people out there who care. I am fortunate in that I have a close family near to me who are supportive, but I don’t like to put too much on them, they have their own lives to live and way to make. My way of dealing with things is to get up and get on with it, which up until now has worked well for me, however at present I am finding it quite difficult. My biggest worry is maintaining my positivity.
I am working on dealing with the fatigue problem, it seems to be a matter of “going with the flow “, resting when my body tells me to,and slowly getting on with whatever, and stopping as soon as I start feeling any strain or tiredness coming on. Frustrating, but if that’s the way it is,I shall have to live with it, like so much with Myeloma.
Thanks again Mavis, and to all of you who have contacted me with kind thoughts and support Best wishes to you all, Jeff

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