Advice needed for unique diagnosis
Dear Community Members,
I hope this email finds you well. I am reaching out to you today seeking advice and support as I navigate a difficult health situation.
Recently, I received the news that I have stage 4 metastatic melanoma of the lung and kidney. I received 4 rounds of Stereotactic Radiation.
Unfortunately, this diagnosis is complicated by the fact that I also have a rare blood disorder called TTP (thrombotic thrombocytopenia purpura).
As I begin to explore my treatment options, I am wondering if anyone out there has had experience with cancer and TTP. If so, I would love to hear from you about the type of treatment you received and how it worked for you.
I am also open to any advice or insights you may have on managing cancer and TTP together. I understand that everyone's situation is different, but any information or support you can offer would be greatly appreciated.
Thank you in advance for your time and consideration. I am grateful for any help or advice you can offer as I navigate this difficult time.
Best regards,
Michael
Hi Michael. It certainly is understandable that dealing with these two conditions is difficult. It sounds like you have melanoma that has spread to the lung and kidney, which will have a different treatment than lung cancer.
Concerning the thrombotic thrombocytopenic purpura, considering you are diagnosed as an adult I'm guessing you have acquired as opposed to the inherited form. Has your doctor had any thoughts on what may have been a trigger (I know cancer can be one - see: https://www.nhlbi.nih.gov/health/thrombotic-thrombocytopenic-purpura#:~:text=What%20is%20it%3F,and%20can%20damage%20your%20organs.) and are you on any treatment? I want to share with you this article which discusses treatment/management of the cancer associated type: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4929977/. Hope this information is helpful and your doctor should be able to discuss this in better/proper detail. Wishing you the best. Richard (LungCancer.net Team)Thanks for the reply. At the time i was diagnosed with TTP my melanoma was stable and 5 years out since surgery at MD Anderson.
My first episode of TTP was 3 years ago, with platelets at 8 and CVA . Shortly after that found the lesion in the lung and kidney.
Hi Michael, I am attaching a link to one of our other sites that I hope you find helpful. Thinking of you and wishing you all the best! Warmly, Alisa, Lung Cancer Team Patient Leader
https://skincancer.net/
Hi Michael,
Have you asked your doctor or social worker for local groups with patients diagnosed with similar conditions? Perhaps that could be a great source to have local access to others managing similar cancers. Wishing you the very best!
Yolanda(LungCancer.net Team)
