My husband has a history of ET going back many years. Around Christmas 2020 this transformed to Myelofibrosis, a more serious type of MPN. This was about the same time he was diagnosed with stage 3 melanoma for which he had a WLE and neck dissection followed by adjuvant therapy with immunotherapy drug pembrolizumab. As past of his monitoring for the Pembro he has had ct scans every 3 months. He also started targeted therapy with Ruxolitinib for the Myelofibrosis. He seemed to tolerate both of these well. In the spring his scan picked up multiple lytic lesion in his torso skeleton. It was unclear whether these were caused by the spread of melanoma or related to the Myelofibrosis- neither the consultant oncologist or haematologist considered them typical for their specialty. He also had peripatetic pain in his ribs, spine and torso. In early September the pain shifted to both thighs and gradually worsened over the space of a week. Eventually one leg gave way and he fell. He was admitted to hospital where they carried out an MRI which indicated a large soft tissue mass around the spinal cord as well as some other areas of cancer. It was assumed to be metastatic melanoma, the given a five day course of radiation therapy and the area was biopsied to confirm the diagnosis, he came home two weeks ago to await the results and we returned a week later to discuss them.
At that point we were told the solid masses were not melanoma but were connected to his blood cancer and looked like “patches of acute leukaemia”. Samples had been sent to the histopathology labs for more specific diagnosis. We were to,d to come back in another week to discuss the results and treatment options.
the last two weeks have been very difficult as my husband has been in a lot of pain due to the spinal compression and has had his mobility seriously impacted. Today we go back for the “big discussion”. My husband is hoping not to have chemo as he is very concerned about losing his hair and reads that as meaning the situation would be less serious. He never Google’s things but just waits for the doctors to tell him what is what. In many ways that seems to be a good approach but I think he is underestimating the likelihood that he will need some very invasive therapy and pretty quickly. My (not very well informed) take is that the less brutal / immediate the suggested treatment is the less chance they think they have of dealing with the leukaemia so the more serious it is.
It is going to be a very challenging day and will also be very difficult dealing with family and friends who know we are waiting for results but we have so far not mentioned the leukaemia to them apart from our daughter.
Hi HollyBT and welcome to this corner of the Community although always sorry to see folks joining us. I am Mike Thehighlander and I help out around our blood cancer groups.
I don’t have AML but was diagnosed way back in 1999 with a rare incurable but treatable type of skin Non Hodgkin’s Lymphoma Stage 4a so although my blood cancer ‘type’ is different I have experienced most types of treatments used but not necessarily the exact same drug mix.
Your husband and yourself have been diagnosed in the wars over the past few years and I see you have Oates in other areas of the community.
With blood cancer nothing is straightforward, a massive amount of science goes on in the background to actually get the clear picture.
You actually can’t second guess what is going to be said and if this is AML what the treatment journey will be like. Over my years volunteering on the community I truly have heard stories that were extremely different from full on treatment to the first treatment putting the AML to sleep.
All the best fir today and do come back once you have all the details ((hugs))
Hi Daveyp702, do remember we also have our dedicated Stem cell transplant support group where you can connect with others who have ridden the SCT rollercoaster.
