Cancer is isolating, rare cancers seem unsupported and the most isolating

Hi Cookknitwine welcome to the forum and so sorry that you have not had a response as yet.

I dont know a lot about your type of Cancer but Im wondering if it might be worth still posting in the Blood Cancers thread as whilst it may not be listed there there could be someone out there looking and wondering about your type of Cancer and like you find themselves in a bit of  minority?  Or you could share your journey in that thread that may help others even if not now then at a later date?

You are in no way and oddity I would describe it more as "unique". You could also give the Macmillan Line  a call and have a chat with them to express your desire to find support or you could write blog which they could help you with? 08088080000.

Sending very best wishes your way for now. 

Hi, I am Franc and have recently been diagnosed with Polycythemia Vera which is classed as a Blood Cancer. I too are looking for support and I'm finding  the site such a minefield. 

Hugs. Hopefully a community champion or team member can help you. I’m still a little bit in limbo, but the general support here for cancer victims is supportive and caring.  The Blood Cancer Uk site is a very useful forum too. 

Hi Cookknitwine, I help out around our blood cancer groups and have not come across CMML2 could you give me the full type name to see if I can help you further.

Hi , I am Mike Thehighlander and try to look after our blood cancer groups.

PV ia one of these life long conditions that we have to learn to live with, my type of Non Hodgkin's Lymphoma is also incurable but treatable so I do have an understanding...... I also was diagnosed was back in 1999.

PV is rather rare and like some of the other rare cancers we dont have an exact group for PV..... we would have a lot of groups if my tried to cover every type of cancer.

But we do have folks come onto the Community looking for help. You could put PV into the search tool near the top and search the site for any posts then you could hit 'reply' and talk with them if they are still on the site.

You may also want to check out MPN Voice a support network for people with MPNs (myeloproliferative neoplasms) providing information and support.

It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.

Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00have a look by Clicking here to see what is available and we also have our Ask an Expertsection, but do allow two working days for replies from our expert team.

If we can help any further do get back to us on this post.

chronic myelomonocytic leukaemia:

The World Health Organisation (WHO) has split CMML into 3 types. They are called type 0, type 1 and type 2. How many abnormal myeloid cells (blasts) you have in your blood and bone marrow samples tells your doctor your type of CMML.

Doctors describe the number of blast cells as a percentage. This is the number of blast cells in every 100 white cells. 

• Type 0 CMML means you have less than 2% blast cells in your blood and less than 5% blast cells in your bone marrow.
• Type 1 CMML means you have 2-4% blast cells in your blood or 5-9% blasts in your bone marrow. Some people have both.
• Type 2 CMML means you have 5-19% blast cells in your blood and 10-19% in your bone marrow.

and hi Mike @thehighlandet

Hi again Cookknitwine and thank you for taking the time to clarify your type and I did not want to jump in and say CML as things are being reclassified all the time

We do have our Chronic myeloid leukaemia group. It’s rather like Lymphomas, we only have 6 Lymphoma specific support groups including our General NHL group...... but there are over 60 Lymphoma types including subtypes..... so we would have a massive amount of groups just for blood cancers alone.

You may want to have a look at the CML group and indeed the general leukaemia group I see you have joined and put up a few posts and see who is around looking in

You can also do a site search using the search tool near the top to see if you get a hits.

I was diagnosed back in 1999 with a rather rare and difficult to treat (1 in 160000) Stage 4a Cutaneous T-Cell (skin) Non Hodgkin’s Lymphoma. I was told “Mike, I am sorry to tell you that this type of NHL is incurable, yes treatable but you will never be in remission”...... but after years of various treatments in September 2016 I was told I was in remission for the first time in 17 years - and I am living the dream.... so do understand being an oddity

Always around to help as best as I can.

Hi Franc. I have just been diagnosed with Polycythemia Vera.

I know the feeling.  The type of cancer I have is almost impossible to pronounce - but I've had 4 years to practice!  I have Waldenstrom's macroglobulinaemia (aka Lymphoplasmacytic lymphoma).  I had a CT scan and a bone marrow biopsy in December 2017 and was told the diagnosis in January 2018.  It sort of lurked for 3 years and then suddenly took off last year.  I was supposed to begin chemo back in March last year but Covid intervened and I actually began this March.  I have a session every 3 weeks, backed up by Cyclophosphamide in between.  

The worst thing is the horrendous neuropathy in my legs, which is worse at night and the nerve damage is now interfering with my ability to walk.  I'm currently stoned out of my skull on a combination of Pregabalin (300mg) and oral morphine which I try to take only at night to help me sleep. I've recently had a CT and an MRI scan and I'm currently waiting for the results.  I've been told that not only do I have an extremely rare type of lymphoma but I'm also part of a "vanishingly small" subset who get pain, rather than numbness with the neuropathy.  Believe me, when I'm walking around my bedroom crying in pain and swearing fluently I would rather have the numbness :( .  I now have a 300ml bottle of morphine - a step up from the small 30ml bottle which was originally prescribed.  It's the only thing which even comes close to controlling the pain.  

Because my type of lymphoma is so rare and because the symptoms I have are even rarer, I find I'm out on a limb. If I join a lymphoma group I find it's not really a good "fit" because people's experiences are of more "common" types. People's eyes usually glaze over when I tell them what I have and I get a lot of "well done for saying all that" remarks.  My consultant is very good and I've now been referred to the Mountbatten Hospice nurses, one of whom came round to my house and sorted out my medications so I can ask her if I have any questions.  It was her who increased the morphine. 

Hi again , good to hear from you.

Just a few weeks back I was totalling with two folks with Waldenstrom's macroglobulinaemia on one of the Lymphoma Action Zoom Support Groups, then your post come up this morning so I thought I would mention it ((hugs))