My father has been diagnosed with malignant peritoneal mesothelioma. I would love to connect with others who are also coping with this extremely rare form of cancer. If you're out there, please say hello.
camille99 I've never heard of this type of cancer or recall anyone posting anything about it but if you go to discussions and click on rare or other cancers it should be there and you might be able to find others to discuss it with.. I hope you can connect with someone.
Sorry we have not been too active. We are on our third year of dealing with peritoneal mesothelioma.Love of my life, Captain Dave was diagnosed 3 years ago around this time of year. We have been through a lot in those three years. If we can offer any support we are here.
He has had HIPEC Chemo, immunotherapy and is now at NCI Maryland in a study trial using an already approved drug olaparib to see how it works on mesothelioma. Lab tests were promising.
Dave is the first human on the trial for this kind of cancer and so far it has stopped the growth, which went crazy after the immunotherapy trial he was on, and seems to be shrinking it in some parts, re PET scans. There are side effects. We are trying to deal with them as they come up. This is one hell of a disease. It is horrid.
I was diagnosed with peritoneal mesothelioma in May 2018, I was also diagnosed with pleural mesothelioma in April 2018. I found some lumps on my abdomen in November 2017, no one could figure out what is was. I had an ultrasound and the diagnosed it as a lipoma. Then I started having shortness of breath and chest pain, I went to the emergency room and the signs of the pleural mesothelioma were picked up on cat scan.
I was sent for a biopsy for my lung in April and for my abdomen in May. No one is sure what came first, but the treatment was chemotherapy first and then surgery.
I started chemotherapy in June 2018. I had a lot of issues. With the first round, blood clots in both lungs, started on blood thinners. Second round, reaction to blood thinner, drop in platelets. Third round kidney function took a hit, I have polycystic kidney disease, the cause of the kidney function problem was chemotherapy. So no more chemotherapy, waiting to see if surgery is still an option.
Aww, we must have posted at the same time. I am so sorry reading your post. This is just a horrid disease and I am so sorry you have to deal with it. It is no longer an old man's disease. I am hearing about many children at NCI who have it. They think from treatments from prior cancers. I keep telling my guy, this is a master class of dealing with life. We are at three years and we do believe there is a glimmer of light happening these days.
Hi Captain Dave , my parents read your blog here and found it really resonated with them, as well as giving them some hope. So thank you. Sharing your story has made a difference. I'll be thinking of you and sending positive thoughts re the clinical trial in Maryland. It sounds promising so far. Strength and best wishes to you both.
Hi Relish1970 , you're showing amazing strength. Thanks for sharing. I'm so sorry to hear chemo caused those issues for you. My dad hasn't begun treatment yet. Official diagnosis was this past week, and we are calling PMH on Monday. Surgery may not be an option for him because of his age. Fingers crossed for you. Sending love and best wishes your way.
I guess I also just want to say how thankful I am for this forum, and all of its helpful posters. I've gotten so many great ideas and recommendations- ie the book Taking Charge of Cancer by Dr. Palma, which has helped my mom so much, and advice about navigating the system. And just reading people's stories and experiences.
Hi again Relish1970 , I meant to ask, if you don't mind sharing, if you've been seen by any mesothelioma specialists in Toronto (or elsewhere, like the US) ? If so, would you mind sharing the name of the doctor? Please feel free to PM me if you'd rather not post publicly.
I haven’t been to any other doctors,just the oncologist and thoracic doctors here in Halifax. Surgery is not an option at this time. I am also dealing with pleural mesothelioma, I am getting a tenokheff catheter in tomorrow, to deal with the pleural effusions. My biggest problem is shortness of breath.
It went well, the surgeon was so nice and skilled. After the procedure the catheter drained 600 ml. I had som site pain,but breathing had improved. That evening, I got very short of breath and tried to drain the fluid but the line clotted off. I went to the emergency room, they gave me pain medication and said to follow up with the surgeon. Yesterday the surgeon got me in quickly and fixed the problem, drained another 800 ml. The only side effect I am not fond of, is the pain after the fluid drains because it drains so quickly. Hopefully with time the amount draining off will decrease and so will the discomfort.
It's great to hear you felt confident with your surgeon. Sorry to hear about the complication after but so glad you got checked and things were resolved quickly.
Is there anything they can suggest that will help manage the pain after the fluid is drained? Can you ask about taking something for pain management beforehand? I hope you are feeling more comfortable and you continue to feel better.
I will ask my oncologist about what I should take before the drain is hooked up, I took dilaudid and Tylenol yesterday and it worked well. I am not a huge fan of opioids but emergency gave me 1 mg tablets only a few, I only take them when the pain is intense.