Hi @Sandra,
Thank you for taking the time and sharing your concerns with us. It is totally understandable that you are feeling how you are Sandra. The prospect of moving from active monitoring to treatment can be really difficult to navigate and indeed somewhat more complicated if you feel that you are having inconsistency with your team and indeed some previous experience of treatment and everything that can bring with it.
May i ask Sandra, do you have a clinical nurse specialist assigned to you at all? If not, this may be something you wish to ring your haematology team about and request as they can be a really great area of support and can certainly help reassure and answer any outstanding questions you have before any decision is made.
Has your team scheduled a follow up appointment in the near future?
If you think it might help Sandra we could arrange a call to either myself and or my colleague @GemmaBloodCancerUK in addition to this. Please do just let us know if this something you would like to talk through further and we can certainly arrange a scheduled call.
Hi, I’m Richard, was diagnosed with Myelodysplastic syndrome (MDS) RARS December 2017. I’m still in the low risk category so watch and wait for me. I took EPO for about a year, but that stopped working and I’ve been have red cell transfusions ever since (seems to have settled on 2 units per fortnight). Currently prescribed Exjade which keeps ferritin level normal. I have some questions which I’d like to ask, mostly concerning the bone marrow, its consistency and how does autophagy work in that region. I understand that part of the problem is that good red cells are impeded by the useless ringed sideroblasts scattered about the marrow so cannot get released into the circulation. Would it be possible to agitate the marrow somehow, maybe with vibration or sound waves or powerful alternating magnet fields to encourage transition?
Hi A great big welcome to our forum @Orm and I am sorry that I cannot help with your question, perhaps someone on your medical team can help, do you have a CNS (Clinical Nurse Specialist)?
I will copy your post to the Blood Cancer UK Nurse Advisors @GemmaBloodCancerUK@LauranBloodCancerUK and @Heidi_BloodCancerUK for you.
I look forward to hearing more about you.
Look after yourself
Hello @Orm, I am very sorry to only just reply to you and welcome to the Forum. It does sound like you are quite stable in regard to your treatment and Myelodysplastic syndrome (MDS), may I ask whether you get any symptoms from your anaemia?
From my experience, agitation of the bone marrow is not something that has been used or considered and I would suspect that this is not physiologically possible but I think worth a discussion with your Consultant for clarity.
In terms of your questions regarding consistency of the Bone Marrow, do you mean in a bone marrow that has Myelodysplastic syndrome (MDS) or in a normal bone marrow? Here is a normal Bone Marrow structure image:
egarding Autophagy being the the cellular process of clearing unnecessary organelles, do you want to understand the process in particular to red cells?
Do let me know or if you prefer to talk things through please do call the phone line: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma
Hi Gemma, I’m under the impression that in the the Myelodysplastic syndrome (MDS) RARS bone marrow, good erythrocytes are impeded by ringed sideoblasts. In my case, my last bone marrow biopsy showed less that 2% blasts. I think this indicates I’m still producing a useful percentage of good red cells, but they just cannot get out into circulation. Is this due to autophagy is not able to keep up or autophagy not a process in the bone marrow?
Hello again @Orm. This is most likely a question for your Consultant who will have a detailed impression of your Bone Marrow function in regrads to your red cell production. As you mentioned there are 2% blasts in your bone marrow so that would imply that you have room for normal function but in Myelodysplastic syndrome (MDS) your bone marrow is producing immature blood cells with poorer function. Do you have any other issues with your blood count? Is it just your red cells that are affected?
Kind regards
Gemma
Hi my name is Caroline and I was diagnosed with Essential Thrombocythaemia with a JAK2 V617F detection in 2010. I have been Ok since diagnosis only taking aspirin, but turned 60 in 2021 and my consultant started me on Hydroxycarbamide 500 mg daily about 5 months ago.
I don’t know if the symptoms I have are related to Hydroxycarbamide but since starting on the course I have severe pain in various joints particularly my top of arms/shoulders, knees etc which have gradually got worse over time. I feel exhausted all the time and don’t sleep well. I’m also going through the menopause and don’t know if some of my symptoms relate to that, I have had recent blood test with my GP to rule out arthritis etc but the test were not conclusive.
Can anyone relate to these concerns or anything similar before I go see my consultant in a couple of weeks time.
Hi everyone
I was diagnosed with multiple myeloma in December 2021 and had been going through the initial chemotherapy for 4 cycles. I had the stem cell retrieval done in may and then there was a delay due to dental treatment. The myeloma became active again and I had to start a different chemotherapy treatment for two cycles. I am now waiting for results to see if my stem cell transplant can go ahead on 8/9/22.
Anyway I just wanted to say hi.
Monique
Hello @Carly,
Welcome to the forum.
Thank you for joining us and posting about yourself. I am sure you will get lots of peer support and advice here.
Sorry to hear about your symptoms of exhaustion and not sleeping. It could very likely be due the Hydroxycarbomide, but after 5 months normally patients are more ‘settled’ on it. It could be low blood counts, have you had these checked recently? Sometimes the Hydroxycarbomide can cause a low haemoglobin level, so it’s worth finding out what your count is. However, it could be hormone related too, so again, it’s worth asking for a blood test to check your hormone levels if your Haemoglobin level is fine.
With regards to your painful joints, did your GP suggest a referral to a specialist, even though the tests came back as inconclusive? I have never heard of Hydroxycarbomide causing joint pain, but others may experience this, and it may be a side effect.
I feel this needs further investigation though. Do you know what tests were done, was it inflammatory markers or specific immunoglobin blood tests? Did you have any x-rays?
Personally, I would suggest that even if other people have similar symptoms to you, and make suggestions on this forum, you should still discuss your symptoms with your Consultant. There may be other tests or treatment suggestions to help with your joints and fatigue that your Consultant can recommend, and if they feel it is appropriate, they might refer to a Rheumatologist/specialist for joint pains.
Please keep in touch and let us know any outcomes from you appointments.
I hope you get some help soon.
Hello @Monique
Welcome to the Forum.
Thank you for posting on this thread and telling us about yourself and what you are currently going through. I am sure you will find this Forum a great resource and good place for peer support.
Please do get in touch with us at any point, before or after your transplant, if you have any questions or queries at all. What a shame you had a delay, but good to know that you have already had your stem cell collection. I have got everything crossed for you that your results are
good, so you can go ahead with your transplant on the 8th September.
Keep us all posted on how things are going for you.
Best wishes,
Heidi.
Hi @Carly a great big welcome to our forum and @Heidi_BloodCancerUK has given you a brilliant response.
I am so glad that you have found us and perhaps it it is always worth keeping your medical team aware of your symptoms and severity,
I have found if I am not sleeping well, I do not cope well during the day.
You have shown so clearly what special unique complex human beings we are.
As you are seeing your consultant in a couple of weeks it will give you the opportunity to write down absolutely everything you want to say and ask.
Please let us know how you get on.
Look after yourself and I look forward to hearing more about you
Unfortunately I am not any further forward. my GP wasn’t much help and more or less said to go back to my consultant.
I have spoken to my specialist nurse this morning who said she had spoken to my consultant and didn’t think it was the Hydro that was causing my pains. She had a quick look at my blood records and said my white blood count is a bit high and there could be some infection, as I have an appointment next week she will add some more tests to my bloods to check my CRP levels etc. Also she will make an appointment with my consultant to go through things.
I will let you know how I get on and thank you again for the information above.
Hi @Carly it sounds as if your specialist nurse was helpful and has added some more tests to your bloods and she will also make an appointment with your consultant to go through things.
Yes, please do let us know how you get on.
Look after yourself
I take 2 x 500 Hydroxycarbamide daily as I have iron restricted Polycythaemia vera (PV). My GP did 6 months in a Haematology ward during his training and he thinks my joint pains are due to gout . No I do not drink heavily apart from the odd Sherry or G and T. I am not sure which of the many pills I consume daily is for the gout. I also have weekly applied pain relief patches which are quite effective at blocking the aches and pains.
At last I am beginning to feel less exhausted and able to tackle issues. So I had a good moan about how difficult it was to contact anyone in the haematology department when I am worried about my condition. Also told them that I did not consider giving me an any time between 9am - 2pm telephone consultation appointment time very patient friendly. Even Sainsburys message a defined time on the day of the delivery. My specialist nurse said she would pass on my concerns.
I do hope your aches and pains have improved.
Marylin
I had my bloods done on the 24th August even taking extra to test further, spoke to my consultant over the phone yesterday and went through my symptoms with him, If anything the pains are getting worse, especially my fingers/hands now.
He looked at my platelets which are higher than they have ever been at over 700, before starting on Hydro they were just below 600. Now also my white blood cells are high and I’m showing signs of inflammation or infection, don’t really understand what that means. It’s all a little confusing and different jargon used which is hard to understand what’s going on.
I had COVID during July but wasn’t really ill just like a really bad flu so could my aches be related to that, also going through the menopause which in itself has a minefield of symptoms related to it.
My consultant has said to stop taking the Hydroxycarbomide for 3/4 weeks until my next hospital appointment and see if my aches and pain symptoms improve and rule out the medication.
He said he would write to my GP as to what we had discussed, but I feel I’m not really any further forward and it’s another wait and see scenario.
It must be really hard @Carly as with so much going on with your body it’s hard to know what the symptoms are related to what!
I hate waiting to. It seems that it’s one thing we all have in common on here and one thing we have to do a lot of!
It may be giving the support line a ring. They will be able to talk through your results with you and explain and answer your questions?
Take care X
Hi
I was diagnosed last September with MGUS. Went to GP because of being fatigued and having joint pain and brain fog which got progressively worse over about 12-18 months and after a full set of bloods everything was fine but found low level paraproteins IgG 3.4 kappa g/L and an IgM of 0.3. g/L. Now having regular checks with haematology. Still have no answers about fatigue, joint pain and brain fog. GP has suggested I look into CFS but really has no answers. Does anybody else have similar symptoms? Trying to work out where to go next.
