Anybody out there with a family member with Asbestoes cancer?

My husband was diagnosed last month with Mesothelioma (Asbestos-Related Cancer) he will be getting a port in Thursday, then starting chemo next week. Already had his right lung talcumed to chest wall lining. What should I expect to come besides the side effects of chemo.? I guess what do I do?

Written By Evie Neumann

{ 1 comment… add one }
  • you_likea_the_sauce January 29, 2009, 5:08 pm

    I'm so sorry. It's a terrible and scary disease and just so hopeless at every turn.

    I lost my dad to Mesothelioma back in 2003. His brother died from it a few years earlier, but progress is being made against the disease all the time. It claimed my uncle in only 9 months, but my dad made it almost 3 years – and was on medicines that weren't even invented when my uncle was battling it. I imagine that's the case now too.

    We were lucky because he was able to be treated by Dr. Jablons at UCSF who is one of the big researchers in the field. My dad had chemo, followed by an experimental surgery, then radiation, more chemo and finally some compassion release chemo drugs that were part of a clinical trial.

    My dad was a active and physically fit, so he was able to monitor his health quite well (he'd actually go for 5 mile walks after having his daily radiation). He could really monitor his breathing and getting his chest drained would make an short-term improvement. As he got sicker he complained a lot of the big "gorilla" that felt like it was compressing his chest all the time. He also had a lot of pain that got worse as his disease progressed – all of the pain was situated in his chest and lungs. He lost quite a bit of weight as he got sicker, and eventually was on oxygen and couldn't walk across the room without having to sit down and catch his breath.

    Some of the odd chemo side effects were that all of his black hair fell out but he kept his gray hair – so he looked older almost over night. It was weird. And everything tasted like metal to him when he was on the chemo (he had Cisplatin and I forget what the other one was)…everything that is but hot dogs.

    I think some of the best advice we had was to really make each day meaningful and be close as a family.

    The other thing that was a great piece of advice from Dr. Jablons that probably isn't so obvious was to not be afraid of young doctors. I remember the second oncologist my dad had was so young we thought she had to be 17. But, young doctors are usually very willing to work really hard and research anything and everything to try and find a way to help you buy some time, while the older, more experienced oncologists tend to accept meso as a death sentence. The younger doctors tend to ask for a lot of advice from the experienced oncologists rather than relying on their knowledge, and they may have open options to participate in clinical trials where more seasoned veterans have used up all their trials. I guess the way a lot of research studies work is that each doctor is allowed 1-2 patients into the trial, so sometimes doctors have used up all their trials. It typically takes a lot of paperwork and effort to get a patient into some of the trials too, but having a doctor who has the tenacity to make sure everything gets done to ensure their patient is included is a relief.

    Sorry, this is long winded but I hope some if it is helpful.

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