Hi, I'm new to the forum.
I was diagnosed with stage 3 B low grade B cell lymphoma with extensive tumour burden in May this year. I completed 5 of the 6 chemotherapy/immunotherapy sessions but didn't complete the 6th because I developed cellulitis on my abdomen and the consultant didn't want it to worsten.
After my last chemo, I've been suffering with debilitating fatigue and nausea, despite taking anti emetics.
My fear is that I'll be stuck with this, and I wanted to know whether anyone else has suffered with this, and if so, whether it got better with time.
My youngest daughter is getting married on the 18th November and I'm afraid I won't cope on her big day.
Any advice, or just a friendly hello, appreciated.
Hello, I suffered with fatigue and nausea before treatment too. It only got better after chemo treatment. Are there no plans to treat?
Hi Nan Nan and welcome to our little corner of the Community…… so you are not long out from your last treatment?
My Consultant told me that going through treatments like these was like doing a boxing match and a marathon every day over the months of treatments and this was done without any training.
Think doing the London Marathon everyday without any training and you had to finish it as your life depended on it……. this is the journey you have been on so it most likely will take much longer than you would think to get back to some normality
Unfortunately lingering fatigue and nausea post treatment is not that unusual…… the body is put through a lot during treatment and the effects of the treatment does accumulate over the cycles.
But this will pass but not as quickly as you would like.
Overcoming the Fatigue often requires some determination… the words of my great CNS still rings in my ears… “Mike the less you do the longer the recovery is going to be”……
I was in a wheelchair at the end of my last treatment but that aside, once I was walking again l set small achievable goals for each day…… yes I would have naps and that’s all ok, your body has been through a lot…… but the body needs to be brought back into shape….. muscles that have forgotten what to do need to be stretched, your energy levels need to be topped up…….. that takes time and work.
The digestive system also takes a hit so again it takes time to recover and for the Nausea to pass. Can you identify any triggers that set the nausea off?…… one of my triggers was actually taking the anti-emetic meds……
All these post treatment ‘left overs’ will pass.
I remember my youngest daughters wedding so well…… it’s an exciting time for you all……. I was having treatment to me face when my daughter got married (I have a rare skin lymphoma) so it did not ‘lk’ 100%…… and I was fatigued….. but the adrenaline of the occasion pushed me through and it was a great weekend….. don’t allow these challenges to rob you of enjoying the time….. everyone will understand and if you have to sit with a cup of tea with your feet up from time to time….. I even feel asleep for a period during the dance on two chairs
….. but I still mustered up some energy to have a few dances…….get your glad glad rags on (I was in full Scottish Highland Dress) and have a great day……. mind you I had the best sleep in a long time that night.
Always around to chat ((hugs))
Thanks Mike, I appreciate you replying to me.
You've put my mind at rest and I will try to push myself more. I'm hoping the excitement of the day will get me through too. I so want to enjoy it.
Take care of you, Nan Nan (Dawn)
I've been given anti emetics but they don't seem to kick in until later in the day. At least I'm able to eat then.
I didn't get the nausea until my last chemo so I'm assuming that's the cause.
Thank you for replying, and take care.
Nan Nan (Dawn)
Very sorry to hear this. Do you have Ativan (Ondansetron)? I found it extremely effective. But, I developed a method of taking it, treating it the same as a heart patient treats their nitroglycerin tablets. I carried them with me. The moment I felt the nausea approaching, I popped a single Ativan tablet beneath my tongue and allowed it to dissolve. Within just a few minutes the nausea was gone. Sub-lingual is the quickest way of getting the medication into your blood stream (other than having it injected).
Another trick I developed was, when I felt the gas bubbles developing in my stomach, I thumped on my sternum with my fist. This seemed to break the bubbles up and allowed the gas - and nothing else - to come up. This may or may not work for others, but it was fabulously successful in my case. In seven years and 18 anti-cancer drugs, I threw up only four times.
I do hope that the cellulitis is well controlled as it can be horrible. As to the nausea in general, your body only becomes nauseated when it detects a substance that it does not like. Even though chemotherapy is ultimately good, your body does not know this and tries to rid you of it.
I would think that you would be in good shape for the "big day"!
Sorry, I think I must have replying to the wrong post as my reply was not relevant. The tiredness does hang around. I hope you're able to pace yourself and enjoy the upcoming wedding.
Thanks for your reply, it was very helpful. I do take odansetron but not under my tongue, so I'm going to try it. The nausea does seem to be lessening thank goodness, but the fatigue is still lingering.
The cellulitis has finally healed, thank you, so all in all I'm making progress.
I so hope you continue to be well, sounds like you've had a long hard slog.
Take care of you, and thanks again for the reply
Dawn (Nan Nan)
Thank you, that's very kind of you.
Take care of you.
Dawn (Nan Nan)
One day at a time, it is very doable. Good on the cellulitis. I had it on my right leg and for a time, amputating the leg would almost have been preferable. Fortunately, I.V. antibiotics knocked the stuffing out of it. Stick with it, you are stronger than you know.
Hi Mike, just dropping in and out, like I usually do, and came across this post. Is that you, in all your finery! Excellent. I am doing well, number 9 maintenance coming up in August, and, as you may remember, COVID put a stop to it for a time. Talking of fatigue, I always remember your words about pushing yourself that extra few minutes to walk etc., which I did all the time, and I am telling you now, that proved to be invaluable for me. I am pretty much back to "normal", or although that may mean "new normal", but so far, so good. Once maintenance has finished, I think I go back on watch and wait, lets see how I feel with that! Take care.
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