So I have ALL and I am 7 months into treatment, just finished consolidation cycle 1, I was in complete MRD at last bone marrow and am having another bone marrow next week.
I have been experiencing weaker legs, aching knees and shoulders and wondered if this is normal or should I be worried? When I’m moving about it’s not too bad but when I stop and then start again eg getting up in the morning it’s the worst.
I have low platelets currently due to fallout from last chemo finished a week ago today and also have some minor spotting on my legs.
I also seem to suffer from a sweaty chest (I do have a larger bust) sometimes during the night.
My energy levels are generally ok and I don’t feel out of breathe unless I’m being particularly physically active and getting a sweat on.
My hypochondriac mind is now wondering if something is wrong with me and I’m relapsing or if this is ‘normal’ for my situation. I hate this constant fear of it coming back and I don’t know how I’ll manage it if I’m honest so just looking to see other people’s opinions.
Sorry for venting and sounding like a nutter so thanks for reading
@Tara if you were older and had a hard life, I would say, welcome to the club, but those are some of the fun symptoms Polycythaemia vera (PV) sufferers get on a daily basis.
BUT you have been on the journey of having liquid fire pour into you, your body has had the equivalent journey of a tenderised steak, put through a juicer and then being reconstituted not to look like a chicken nugget.
Give yourself a break, take it easy and as our @Erica would tell everyone, write down your questions and ask your medical team firmly, spanking them with the Woman’s Weekly is an optional extra (Got to love that song)
You are learning to ride the skateboard again, give it time.
Oh @Tara thanks so much for posting,
I echo @clickinhistory, but perhaps not with the same phraseology!!
Perhaps there is no ‘normal’ because we are so special unique beings
Perhaps your question is best asked of your medical team as they know you, your medical history and treatment
Give yourself time and be ever so kind to yourself, you and your body have been through a lot.
Please do keep posting how you are getting on
Hi @Tara.
This is the place where you can vent so I’m pleased you have. The unknown is so scary isn’t it and I think we all understand that feeling.
As everybody else has said - wrote down all those questions ready for your appointment and keep a diary of symptoms.
Remember, we are here to listen and support so keep posting x
Hey @Tara,
Please never apologise for ‘venting’ & you absolutely are not a ‘nutter’. You are human!.. going through the most testing of times right now, which is unknown territory, with no guide book to see you through the constant ups & downs. Therefore we welcome your updates!! Not knowing why you’re feeling how you are can be really challenging so I’m pleased your seeking some support. Also with a new scan date pending this can also heighten everything you are feeling along with relapse stresses.
Of course it is all very likely that your body is simply coping with everything its being put through & it’s beginning to talk to you. I’m sure you’re well aware by now that chemo can cause so many different symptoms and sometimes at times you least expect. I would echo what everyone else has suggested and perhaps keep a diary of how you are feeling so you can let your haematology team know.
Please also remember that along with our brilliant forum, you can call our support line if you need someone to talk things through with. We would love to support you in any way we can- 0808 2080 888.
Hi @Tara you have had some fantastic advice already.
Just a thought to add on the worry front - and something I found helpful- journaling or as we would say in the UK a diary, can be a real lifesaver it’s useful for:
Getting anxieties down on paper can be a great release, helping you see things clearer.
Tracking symptoms. Keeping a record of aches, sweats, and energy levels can help identify patterns and see if anything links to treatments or activities.
Seeing progress. When you’re feeling overwhelmed, going back and reading about how far you’ve come can be a real boost.
Planning doctor chats. If you have concerns, journaling can help you organise your thoughts and questions for your doctor.
Here are some journaling prompts I used might help get you started:
“What worries are niggling me right now?”
“What am I particularly grateful for today?”
“How are my symptoms affecting my daily life?”
“What questions do I have for my doctor next time?”
Remember, you’re not on your own. There are many people out there who understand what you’re going through. Keep venting, keep fighting, and keep reminding yourself how strong you are!
Ps my journal got so big it became a book ! I have just finished it ! 66,000 words! I never ever thought I would be able to write a book but I have. It’s called Everything Happens For A Reason .
Hi @Tara I will be thinking of you on Wednesday, it is natural to feel anxious when not knowing and perhaps it is worth letting the medics on Wednesday know how you are feeling.
Please do let us know how you get on and be very kind to yourself.
Just wanted to offer some support! Waiting for results can be so hard, and it’s completely understandable that you’re worried.
It sounds like your team is on top of things, though. Will be wishing the best for your bone marrow results and that they will be quick and give you some peace of mind.
In the meantime, try to be kind to yourself. Maybe some relaxation techniques like meditation or deep breathing could help? I found yoga when I was first diagnosed it really helped me.
This is a marathon, not a sprint, so looking after yourself is important.
Thinking of you and sending positive thoughts your way!
I think you are doing brilliantly @Tara
Having appointments postponed allows makes me anxious too, more waiting and not knowing.
Looking after yourself is the key in my book and keeping posting
Bone marrow was completed today, chuffing painful as he hit a nerve on the way in. Seems like they got some good samples. They are testing for my MRD and also a FISH test for a chromosome IKZ1 deletion. So now it’s all waiting for the results to come back.
Iv been readmitted to hospital for consolidation cycle 2 today as well so it’s been a stressful and uncomfortable day today.
So update is I’m still in MRD remission which is good. I’m waiting on a FYSH result but that won’t affect my treatment route but will mean they want to do one more bone marrow at the end of treatment to check I’m still in remission before moving into maintenance.
(Got to love that song)