Hi. After two biopsies and four weeks of waiting I finally found out exactly what the tumour is that’s growing in my chest. Myeloid Sarcoma.
I now have to have a bone marrow biopsy (to see if I have developed leukemia as well) before I start treatment, which I was told is very intensive and could mean 4 weeks in hospital!
I was just wondering if there’s anyone on here who has had Myeloid Sarcoma and what the treatment is like?
I would like to welcome you to our forum @Nethermoor I am so glad that you have found us, unfortunately I cannot help you medically, I have Chronic lymphocytic leukaemia (CLL), but I was struck by your words of ‘4 weeks of waiting’. I think since diagnosis I have spent so much time waiting for tests, the results and appointments and I think that is the worst time, the being out of control, awaiting others, the new language and of course the not knowing, no wonder I don’t deal with what personally stresses me now.
It must be very scary time for you with the bits of information about the treatment programme you might have sounds so daunting.
If you would like to talk to someone the Blood Cancer UK support line is there for you and you are now part of our forum family. We might have had different experiences but many of us share the same feelings, emotions and practicalities.
Now is your opportunity to write down all your fears and questions before your next medical appointment.
I look forward to hearing more about you and do you have any support.
Look after yourself you are going through a lot.
Hello @Nethermoor, welcome to the Forum and I am glad you have found us. I have cared for patients with Myeloid Sarcoma over the years and I am more than happy to answer any questions that you might have. It is very unfortunate that there is very little information that you can be given as the disease itself is rare but as you may have been told it is associated to Acute Myeloid Leukaemia and often treated similarly with Intensive Chemotherapy. If you do go on to have intensive treatment then you can be in hospital for 4 weeks, the reason for this is that your immune system will be very low following the chemotherapy you are given. The nurses and doctors will look after you closely, manage any infections you may have, support your blood counts with transfusions and manage any side effects. The team will go through all these side effects but do look at our information pages to get an idea of what to expect Leukaemia treatment and side effects | Blood Cancer UK, you won’t experience all the side effects mentioned but it is important to report any worries and side effects to the nurses as soon as you experience then they can manage them quickly for you. Have you met a Clinical Nurse Specialist yet? If not yet, then when you do you will be supported by them throughout your treatment for practical, clinical and emotional support. They will also arrange, along with the Doctors, the re-assessment of your Myeloid Sarcoma after the treatment to evaluate it’s success.
I am sure you are still very overwhelmed by your new diagnosis so please do give us a call when you know the plan ahead and we would be happy to talk things through when you are ready Blood cancer information and support by phone and email | Blood Cancer UK. Do take care Gemma
Thanks for the info Gemma. Funnily enough I did have an appointment with my clinical team yesterday, including my assigned specialist nurse, who is brilliant. I also had more blood tests plus a bone marrow biopsy, which is pretty ‘physical’! I have a follow up appointment with them a week on Friday where they should have most of the bone marrow results which will help them fine tune the treatment. That should hopefully start the week after. This whole process has been going on since February! I was taken down to hospital struggling with my breathing and suffering with dizziness and feeling feint, head swelling and thread veins on my lower chest. I thought it was long covid! How daft was I. They found a mediastinal tumour that was causing SVCO. I’ve since been on steroids, had a stent fitted, had two biopsy’s (as the first sample wasn’t great). I’ve been told it was lung cancer, then lymphoma. I was then handed back to the Respiratory team, who then told me it was blood cancer once the 2nd biopsy was tested. I was then told it would probably be a lymphoma until the final biopsy results when I was told about Myeloid Sarcoma. So to be honest getting this diagnosis was a relief rather than a shock. In fact the biggest shock I’ve had so far is being told I will be in hospital for 4 weeks! I just want to crack on with the treatment and beat this thing.
Thanks for your help and info Gemma. Hopefully I will get through this.
Hi @Nethermoor you sure will get through this you have got your forum family to support you and the Blood Cancer UK support line when you would like to talk.
Your Specialist Nurse sounds wonderful, she is your key point of contact if you would like to ask or are worried about something.
Don’t underestimate the shock and mixture of thoughts and emotions you are going though.
Look after and be kind to yourself
Welcome to the forum. I can’t offer anymore advice or info than both @GemmaBloodCancerUK and @Erica have given.
Yes - the waiting is just awful, alongside all your tests etc. It is physically and emotionally exhausting! It sounds like you have a really good medical team around you which makes all the difference.
This is a great place to share, ask advice or just to offload. Please keep us updated on how you are.
Please take good care of yourself.
Sending extra special wishes X
Dear @Nethermoor, thank you so much for your update and I am so pleased that you have met your Specialist Nurse, they will be a huge support I am sure. It sounds like you have had a torrid time before getting to this diagnosis and plan. Please use all the resources you have and keep talking. As mentioned before the Support Services team are here on email or phone Blood cancer information and support by phone and email | Blood Cancer UK and do continue to use the forum as there is a lot of support here for you too. Take good care, Gemma
Hi @Nethermoor I have been thinking of you and I wondered how you are?
Glad that things are moving forward for you @Nethermoor . Nobody is going to pretend that any of it will be pleasant. All of us on here have had similar experiences, but you do work your way through it and come out of the other end with your life back. Cling on to that.