[richardeliParticipant]

Hi everyone,

I had my stem cell transplant 30 days ago.  Like everyone, I’m sure, it leaves you feeling very weak and wobbly with a good deal of nausea.  I do feel that my strength is slowly returning.  My blood counts are progressing well.  What is slightly worrying me is that I can feel quite good one day and able to do a few things.  And yet I can feel really lousy the next.  At this stage of my recovery, is this to be expected?

Thank you

Richard

[michellemacleodParticipant]

I was like this for quite sometime, smallest tasks some days took me ages to achieve. It will improve little and regular tasks are what I focused on once home from hospital.

i am now working albeit part time, enjoying my garden again and walking my old walks ( little bit slower ) so hang In there,

regards michelle

 

 

 

 

[rebeccaRParticipant]

Hi – 30 days is very soon after such a big procedure. A consultant likened it to having open heart surgery so that should put it in perspective. Your immune system will be up and down as it reconstructs. I was very up n down for quite a while but once I’d turned that corner I went from strength to strength and would say back to full fitness in 3 months.It was a rocky road for a while – it is a major procedure that has permeated your whole body/being – try not to be impatient but also set small goals each day to strengthen and gently push yourself. Listen to your body and rest when necessary to aid recovery as you have plenty of time now.
Rebecca

[richardeliParticipant]

Thanks so much Rebecca,  That’s really helpful and reassuring.  I guess I’m being too impatient.  It’s just that it worried me feeling OK one day and then bad the next.

Regards

Richard

 

[richardeliParticipant]

Thanks very much Michelle.  I will certainly take your advice.

Regards

Richard

[alisonmarshallParticipant]

I too am about the same stage as you, are you taking the antibiotics? I found they made me very poorly and now doing the inhalation, this too made me poorly but it’s only once a month so time to get over it. I find my energy levels go up and down during the day and each day.  I love to set goals and walking is one of mine, each week I am able to walk more and use a fitness monitor to register that. Are you able to walk? The fresh air and being in nature are great healers and I can see how I’m improving on days it doesn’t feel like I am.

i think a positive mind is the most important thing, finding something that has improved, keeping a record of all you have achieved and of course, being kind to yourself, you might be doing too much. My psychologist stated the fatigue cannot be worked through and if you do you delay recovery, so maybe you are doing too much?

Good luck with your recovery, there is some useful stuff about wellness on the Macmillan site worth looking at too

 

[richardeliParticipant]

Hi Alison,

Thank you very much for your helpful reply.

Yes, I’ve started on the antibiotics and so far, luckily, they are not affecting me too much.  What is the “inhalation” you refer to?  I haven’t heard of that.

I’m sure you’re right about remaining positive,  I try very hard to do that but must admit that I get down a bit when I have one of my off days.  I saw my Consultant yesterday and he said that most patients have days when they don’t feel so good and also said that I am still at a fairly early stage of recovery.

Thanks again for your comments and good luck.  I hope you continue to make progress.

Richard

[richardeliParticipant]

Hi Alison,

I hope you continue to make progress.

Since our last posts I too started to suffer badly with Septrin and, like you, the inhalation didn’t make me feel great.

The Septrin started to reduce my white blood cell count, and although I stopped taking it 3 weeks ago, it’s still going down. Did you experience this at all?

Regards

Richard

[tmcintyreParticipant]

Hi,
My husband is 5 months post transplant. He is back at work and gradually building up his hours but he is shattered when he gets home. His legs are still weak and he gets breathless easily. We’re hoping that losing the weight he put on during induction treatment will help but as he is on maintenance treatment including steroids its a slow process.

Medically, his blood and kidneys/liver are all normal so its just down to him now to build his strength up,

Teresa

[pippyParticipant]

Ha everyone on this part of the forum been asked to wait for weeks before they speak to their consultant and have another blood test? We have been asked to wait 10 weeks, with just pain relief, no other drugs. Is this normal?
None of the medical support staff have mentioned a maintenance medication post stem cell transplant. Has anyone else been offered maintenance medication?

[Anonymous]

Hi Pippy,

I’ve just responded to your question about maintenance treatment on the other thread but here you mention post-SCT drugs. I came out of hospital with antibiotics, anti-viral medication (Aciclovir), an anti-fungal medication (because I was still mildly neutropenic) and special mouth-wash. My local consultant also prescribes high-dose Vitamin D.

Does your relative have access to an email address for the Clinical Nurse Specialist team from the hospital that treated him/her or their local hospital CNS team? If they (or you on their behalf) are feeling worried, this can be a really helpful way of getting answers that are specific to your situation. I hope this is helpful and that you will soon feel reassured.

Rachel

[susantrParticipant]

Hi
After my SCT (2016) I was not on any medication. Once discharged after 24 days I had daily platelet infusions for 3 weeks. I was sick several times a day and very weak it took at least 4 months for me to regain some strength. I had a rocky road, with complications whilst having SCT suffering a brain haemorrhage and subsequently losing the sight in my left eye. However, after 4 months I went from strength to strength and 4 years later I am doing ok, still in remission without maintenance (fingers crossed). My quality of life has been excellent and I am very thankful. SCT is harsh. Be kind to yourself. X PS I was on the Myeloma XI trial and was randomised for Revlamid. I took 2 weeks but had to cease because it affected my liver. For me it was meant to be, but I am glad to hear that you o longer have to be randomised after SCT.

[Author]

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