Extreme Fatigue

Mesothelioma

A place for people affected by mesothelioma to get together, ask questions, share experiences and support each other.

Extreme Fatigue

No. of entries: 16 | Posted on 06 Jan 2013 08:39

Extreme Fatigue

  • My husband was diagnosed with mesothelioma in October 2012 having previously been a very active person. Like many he was told he only has months to live. He started his chemotherapy at the begining of December and was quite ill after his first cycle. Very breathless, coughing and in great pain. He had his second cycle nine days ago but this time he has extreme fatigue, he just can't keep awake, he isn't coughing as much but still very breathleess when doing anything. Does anyone else have experience of this and is this what we are to expect. I don't know whether it's good news or bad news what he is experiencing.He seems worse since starting the chemotherapy but is that normal or are we better not having the chemotherapy. If you only have a short time to live surly quality of life is important. It's all so scary and you feel so alone.

  • Hi, so sorry to hear you are going through this. My dad was diagnosed in September, he has just had his last dose of chemo on 4th January, he is 60. Each dose seems to have affected him differently. After the first he was mainly ok, he did get lots of breathlessness that only lasted a couple of days, second dose was breathlessness followed by extreme sickness, this lasted about 1week. Third dose was breathlessness and tired bit he's still been mainly very active during his treatment but falling asleep on the sofa a d going to bed early. I'm sorry I can't help much but hopefully if you can get a few different slants on it then it will help. Love to you all Gill
  • Hello Londyn

     Everyone react to chemo differently.. My husband was diagnosed with mesothelioma in November 2011 and was told he had 3 / 6 months to live. Now 14 months on he is still here and fighting. He seemed to follow much the same pattern of side effects as your husband. Extreme fatigue is a very common side effect. But if you are at all concerned about ANY side effect then you must not hesitate to ask you Macmillan nurse. He only received 2 cycles of chemo as that was enough to put the mesothelioma to sleep. Now 6 months after the last chemo his consultant says there are signs that it isis waking up so is going to restart the chemo at the end of this month. 

    If the consultants thought the chemo was having an adverse effect on your husband they would stop. In our experience it is worth persevering with. 

    It's not an easy journey you are on but try (I know it's difficult) to keep a positive attitude. 

    Can I suggest you also go to the CARERS ONLY group. As a carer you may find there will be lots more feedback there. 

    I know it's not easy but keep your chin up.

    Sending you love and hugs!!

    Sue x

  • Hi Londyn my dad was diagnosed Feb 2012, he had 4 cycles of chemo which he coped reasonably well with, he had extreme fatigue and breathlessness which can be brought on after chemo because of low red blood cells, he was given anti sickness tablets which also helped his appetite. After the chemo the meso settled down and he has had quiet a good year, apart from odd days when he was really tired and the occasional aches. His cough hasn't been that bad up to recently but after a check up and x ray in December he was told there was no change since last February and a cough is expected with his illness. It is very scary and I've seen my very active young at heart dad turn in to an old man, although mentally he is still young at heart and coping with it all extremely well, it breaks my heart to see the change in him and it must be worse for my poor mum who is caring for him and with him 24/7 but we can't really grumble as he is still having a reasonable quality of life and is still driving and getting out and about. I hope your husband feels better as he gets through the chemo and going off how my dad was after the chemo I would defiantly say it's worth having.Take care Susan x
  • Hi there, my dad (64) was diagnosed in November, he's had 1 chemo session and hasn't stopped being sick/retching in over a week and has refused any more chemo sessions. His view on it is with limited time left, why put himself through it! His sickness was so severe he cracked a rib on the opposite side to his already sore lung drain.  He wont let me visit as he's a very proud man and doesn't want me to see him this way so I phone daily whilst worrying about him and my mum constantly.  I seem to be functioning on auto pilot!

    Good luck and keep fighting

     

    Tracy xx

  • Hi Sue, thank you so much for your reply and sharing your husband's experiences with me. How do we access a Macmillan nurse? It is encouraging to hear that your husband is still fighting this horrible disease but sorry that he has to start chemo again at the end of the month. I wish him and you all the best (love and hugs). You mentioned the carers only group. Where do I find out about them! Thank you for encouraging me. We all need to stick together to help each other through the ups and downs. Love and hugs to you all, Londyn

  • Hi Susan, thank you for your reply. Sorry to hear your dad was diagnosed with mesothelioma last year. It sounds as if he is doing well after his chemotherapy even though he suffered from somehorrible side effects. It must be so difficult to see your dad change from a very active man young at heart into an old man. I really feel for you, This sounds like my husband who was a young 70 year old. I am so glad your dad is still able to drive and get out and about. My husband has his third chemotherapy next week so I will think of you and your mum and dad and try and stay positive. Thank you for your encouragement. Take care Londyn X

  • Hi Tracey, thank you for your reply and encouragement.I am so sorry to hear your dad has had such an awful reaction to the chemotherapy. It must be so difficult for you and your dad and mum to deal with the situation. I really feel for you all. Lots of hugs and kisses to you all. Londyn XX

  • Hi Gill, I am sorry to hear about your dad's diagnosis. Thank you for sharing your dad's experiences when having chemotherapy. Although each person seems to experiences slightly different side effects it helps to communicate with other people in a similar situation. I hope that his chemo really helps him. Your reply has been very helpful. Thank you,, Londyn XX

     

  • Hi Londyn,

    Firstly your GP will refer you to the Macmillan nurses. Just ask. It is a pretty quick process.

    Secondly. At the top right corner of this page there is a search box. Type in CARERS ONLY and some options will open underneath the search box. Click on CARERS ONLY under the group's heading and it will take you there. I too am in the CARERS ONLY group. 

    Love and hugs. Sue xx

  • Hi Londyn,

    My Dad  was diagnosed in Oct 2002. He never had Chemo or anything .
    He fought even though they told him 7 weeks plus or minus.
    He surpassed that and didnt pass away till dec 2004.

    So sorry that I cant give you any advice on that. My brother is having Chemo and RT right now but thats for Oesopageal Cancer.
    Everyone reacts different to the side effects im  afraid.

    Lots of good people on here for chats.

    Take care,

    Traci xx

  • My husband got the news of this horrible disease in August 2012. He did have surgery, but unforunately the PET Scan didn't show or the cancer progressed quickly and only part of the surgery could be done. I wish we had know prior to the surgery - with recovery it slowed the treatment with Chemo. So far he has had 3 chemo sessions and on the 30th of Jan they will do another pet scan to see if this cancer has slowed down and I pray has gone to sleep. My husband doesn't like the chemo but the alternative is worse so the cycle seems to be Chemo, then 2 days after he is fine and then for 3 to 5 days he is sick. He is able to maintain and we live in a state that does have medical marijuana and during those bad days he eats a small piece of brownie with marijuana butter and his stomach settles down and he is able to ear small light meals. I have always been against drugs but if it helps him I am all for it. During those bad days he does sleep alot and I believe that helps as well. Do any of you have a lawyer and going after compensation? I had not seen anything on this site by anyone and was just wondering. We do have an attorney and just waiting to see what is going to happen. All I can say - I want my husband to live a very long time - I know there is no cure to this disease but if we can slow it down we will do anything to make that happen! Michele

  • My partner was diagnosed in October 2010 , like your husband he was very fit and active. He had the six cycles of chemo and had all the symptoms you mention, especially the extreme fatigue, when he was totally poleaxed.

    The routine seemed to be chemo, followed by a few days when he wasn't too bad ( usually due to the steroids) then a rapid slide  down hill as soon as he was off the steroids, with days of extreme fatigue and nausea. Sometimes he would have some days mid cycle when he used to rally but these were totally unpredictable. the first four cycles were the worst, strangely enough the fifth cycle was easier, maybe because the end of the regime was in sight.

    I phoned the 24 hour helpline once or twice but the major concern was always around infection, so we took his temperature at the same time every day and wrote it up on a chart, luckily he didn't have any issues.

    His bloods were taken each time and were pretty borderline at times, but he was always able to proceed with the appointments. his red blood cells did decline which can cause breathlessness and fatigue and I know some people have had to have transfusions but am sure this wil be picked up at the regular testing.

    Chemo is a huge demand on the body, I watched a fit and healthy man age before my eyes,  and we were told it was essential for him to eat to keep his energy levels up to help support his immune system ( he found the special drinks you can get with extra calaories to be a godsend, our local GP prescribed them )

    good luck - it isn't easy but you can both get through it , even if at times it seems impossible.

    Amanda

  • Hi Sue, Thank you for the advice about the Macmillan nurses. My husband is seeing a palliative care nurse at the hospital which I understand is what Macmillan nurses are called now. It was onlly when you you sent me your message about him seeing a Macmillan nurse that I found this out. I have also joined the carers only area on the Macmillan website which is very helpful. Thank you so much for your advice and support. Take care of yourself. Love and hugs, Londyn xxx

  • Hi Traci, I am so sorry to hear about your dad.You must miss him a lot. Thank you for sharing your experience with me. Sorry to hear that your brother is having chemo now for oesopageal cancer. I hope all goes well for him. As you say everyone reacts differently to the chemo. Yes I agree this is a really good site to talk to people. Take care, Londyn xxx