Hi,
Been going through a lot lately, so haven’t been able to post.
My Rheumy did a blood test that indicated possible cancer.
I saw the Oncologist yesterday and had a complete bone scan and skeletal survey. The doctor said that a possible Diagnoses of Lymphoplasmacytic lymphoma, one of the symptoms is burning hands and feet, along with neuropathy symptoms. I think I would rather have EM from a unknown cause!
The bone scan showed a hot spot at the Thymus, so this may be the cause of the burning sensation.
FYI
The blood test identifies an M protein IgM Kappa, the IgM is rare, but if you just started having symptoms, you might want to get the blood test! It is a little late in coming for me…
Jon I am sorry to hear this. Cancer is given as one of the possible causes of EM and it isn’t news anyone wants to hear.
I can only hope your situation isn’t as bad as it sounds and that the treatment will be successful.
With very best wishes
Nel
I hope your oncologist takes very good care of you, John, and that you get the best possible outcome. Sending positive energy and good wishes.
Sorry to hear this Jon. You say it's a little late coming for you, have they said it isn't curable? Or is there something they can try?
Jon, I am so sorry to hear this is a possible diagnosis for you but it sounds as though you're now in the right hands with your oncologist. As I wasn't familiar with lymphoplasmacytic lymphoma I have just looked it up on the Lymphoma Association website and in case you or any other members want this information here is the link to their factsheet.
Please take good care of yourself. With all best wishes. Jules
Thanks for the kind words.
Sheltie, They have a few things that they can try, I haven't heard yet of the stage of the cancer, just had my first visit, and bone scan. They can do chemo and maybe stem cell bone marrow replacement, they can slow it down a little with Biologic drugs, I don;t know if they can "cure" it, depends what stage it is in. My bone scan shows throacic, sternum, and rib involvement, along with thymus, and testicular cancer. obviously it is a slow growing type, as the mean life expectancy is 6-10 years, and I have probably had it at least 10 years!
I have very little pain,(or I don;t register it much in my mind) and feel good, so it could still be at bay...
Thanks to everyone for the support, I would rather just go back to hot feet then have the rest of this! but such is life...
Well, sounds like there is hope that at the very least they can slow it down. Plus, you never know with cancer they are very often wrong with life expectancy. As long back as the 80s I met someone who had moved to Cornwall. He had packed up his job as his wife had been diagnosed with terminal cancer and so they decided to just try and enjoy the time they had left. They were told she only had months to live. However, this was 10 years later and she was still alive!
Well, since I have had burning hands and feet for at least 38 years, the cancer must be slow growing. There is always hope…
You are right that's the way to think there is always hope and as you say due to the fact that you have had the symptoms for 38 years the cancer must be extremely slow growing. I know it's hard sometimes but often people have said to me to think positive and though sometimes that isn't easy it's certainly correct. I try to focus on the things that I can do that I enjoy doing. Thankfully my brain still works and so I am able to do things on my computer. My office has become my living room these days. I was given the chance of going to a day centre rather than be just stuck at home, but I declined, as the last thing I wanted to do was sit around a lot of people talking about their illnesses. I want the exact opposite I want to do things that take my mind off how bad I am feeling rather than dwell on it.
So true! The hardest part is dealing with friends, family and love ones…
For myself I am up for the challenge, let’s attack this, but my doctor is kind of edging around the problem. He has probably seen to much in his career…
One of my approaches is to learn all I can of the illness, including the possible treatments, some of which will test my strength and fortitude.i think it helps that I have been practicing meditation for almost 40 years, it gives me the inner strength and non attachment to the results.
One of my coping mechanisms, is doing things for others, even if it is just holding a door open, or offering a smile, what it does is change the focus from my ego to a more expansive consciousness of thinking and feeling for others. This also helps with chronic pain of any kind, if you have your attention only on your own pain, it will intensify, but if you can detach yourself by having empathy for others, it goes a long way!
They have focused a lot of research into cancer treatment, though this is a rare form, they can still use the technology to slow down the process, if not stop it. I feel my doctor will help me with the right choises with regard to my treatment.
Yes, you say about helping others that is good and being able to smile, however, I often feel that goes against me when I go to see a doctor, as I can still smile and even have a joke about things. I am sure that a lot of them think that I can't be that bad if I can do that! My own GP realises that now and accepts it as a good thing, but it's going to a new specialist that does't know me very well that I think it's a problem.
As for helping people the one thing that makes my life worth living is doing voluntary the website for the RSPCA Cornwall Branch. If I can help animals find a new home then that is a good feeling. Sometimes it is hard when I am not feeling great e.g. yesterday I had 15 new animals to put on the website and it was important to get them on as it was the Summer Show today and so I felt I had to do it in case people saw an animal on the website and decided to go to the show. This is the first year I haven't been able to go to the show myself.
However, sometimes it gets me annoyed when charities don't appreciate help e.g. I had a sideboard to donate and you wouldn't believe the trouble I had getting any of them to come for it. Plus, I have a load of tinned food that my husband used to eat that I don't and I rang the local food bank to offer it to them, but they failed to come and get it.
It's great that you have a doctor who you have confidence in to help you fight this horrible thing, so good luck with it all.
Jon, I find your attitude and thinking to be so positive and encouraging. Thank you for sharing! By the way, the rheumatologist I saw last week ordered the same tests you described. I think it’s a great idea to be thorough in testing in case something unsuspected might be rebealed. Best of luck to you with your upcoming treatments!
Good news, oncologist said according to the bone scan I do not have cancer! So I still do not have a cause for the EM, but glad I don’t have cancer… I will still have to do some further testing…
Jon, that is GREAT news. I am so happy for you. One down, one to go!
Jon that is wonderful, good to hear something nice for a change. I know it doesn't solve things, but better than you thought!
That's fantastic news Jon!! SO happy for you!
Jon, glad to hear you don't have cancer! This is always a good report! So happy for you!
Though, I can appreciate the frustration of still not having answers for a long and arduous search to unexplained illness...
Thanks, I can wait, rather then get a Cancer diagnoses! :)
Praying for success and a good outcome for you Jon....................................
Hi,
The latest finding are possibly Antiphospholipid syndrome (APS) this can cause blood abnormalities; blood clots, brain fog and nerve problems. This is yet another autoimmune disease, I already have SLE Lupus, psoriatic arthritis, and Raynaud’s, so these all can influence the small fiber nerves.
The WM lymphoma is not off the table, but the finding was low, so I get tested in November.