Mesothelioma - no known asbestos exposure - compensation experience

Oh thank you so much for sharing. This has given me some hope that we can slow this thing down. My husband and I decided to take a few days hiking and having fun and hope that I wake up and it all has been a horrible nightmare. Terrible telling the kids.

The oncologist says everyone is different but knowing there are others out there helps.

Good luck on Monday. Keep me posted.

@sueligthart, this is such a difficult time in the process. It sounds like you are doing what you can to find some peace in this storm. Being in nature sounds corny, but it helped me during the early days of diagnosis. It was my place where I could feel the range of emotions and let some of them go. Enjoy your hikes.

Thank you. I was hoping Mayo would be able to offer a miracle - being told they cannot it hard to come to terms with. With treatment 18 months without half that time. The un-fairness of it all, I've taken good care of myself, exercised eaten well and worked hard and just when I see my family blossom and my husband and I think about winding down and retirement - this. I will accept help from the palliative team and hope I am in the tiny group that get a few more years.

We are hiking in Utah, enjoy the nature, every breath is a reminder. Trying to focus and being able to enjoy the sun and nature.

Thank you. I was hoping Mayo would be able to offer a miracle - being told they cannot it hard to come to terms with. With treatment 18 months without half that time. The un-fairness of it all, I've taken good care of myself, exercised eaten well and worked hard and just when I see my family blossom and my husband and I think about winding down and retirement - this. I will accept help from the palliative team and hope I am in the tiny group that get a few more years.

We are hiking in Utah, enjoy the nature, every breath is a reminder. Trying to focus and being able to enjoy the sun and nature.

Oh thank you so much for sharing. This has given me some hope that we can slow this thing down. My husband and I decided to take a few days hiking and having fun and hope that I wake up and it all has been a horrible nightmare. Terrible telling the kids.

The oncologist says everyone is different but knowing there are others out there helps.

Good luck on Monday. Keep me posted.

The news was good. The CT scan shows no change without the maintenance chemo. My oncologist advised that another 3 month break from chemo wasn't risky. The maintenance can slow recurrence when the cancer becomes active again, but nothing cures mesothelioma. I will return for another CT scan in July, and we will make another decision about maintenance chemo then. My oncologist sees several mesothelioma patients, and she has told me about a man in his 80's who underwent the same initial chemo and started maintenance, but like me had bad side effects from the maintenance. He stopped the maintenance and underwent regular CT scans, and went 2 and 1/2 years without recurrence. He is now back in the maintenance chemo saddle, but that word "years" was music to my ears as I am sure it is for yours, too. If your initial chemo arrests the mes as mine did, I would like to think you have reason for hope, too. Best, Judy

There is no evidence of spread outside of the lung area. The surgeon mentioned the MARS2 study and essentially said the results/quality of life do not support surgery. That 30% of patients die within 90 days of surgery and the data does not support a longer survival rate.

It was brutal hearing I have 18 months and that information sinking in.

I by pure chance met someone while hiking who pointed me to Western Australia where they have a lot of cases and are leading in research - they trialed a drug which had good results - but still we are talking of extending life by months - not years.

So I have just completed round 3 of chemo. Carbonation, pemetrexed plus bevacizumab. I have tolerated it pretty well and have not taken the nausea/pain meds and have avoided their side effects - of which there are many.

If you are starting this journey some things I have learned. Everyone responds differently to the treatments and my response may not be yours.... but I am more hopeful now than when we started this journey.

1. They ask you to take folic acid - this is OTC so you can start pre-appointment
2. There are options - The UK and Australia may start you on immunotherapy first - they have a lot of cases there and that is where most of the research comes from - in the UK though if you don't take immune therapy first they won't then cover the cost of chemo. My sister who is in the UK knows two sisters who have this and they are 3 years in and no side effects - each person responds differently but I found it good to hear. I think the US protocol is chemo first.
3. Surgery is really not a popular option with surgeons anymore. The UK Mars 2 study showed no benefit for surgery versus chemo/immune therapy. Risk of not recovering from surgery is really high and the recovery is really long. It may still be an option for some - I'm not ruling it out, just very very nervous about it and there are questions about the study. Without surgery they can't offer radiation therapy. There is a new machine FDA approved from Michigan which uses a radiation type bubble - don't understand it totally but amazing results of blasting away liver tumours - with no side effects... now if anyone is going to get one of these it will be the Mayo. My point is there seems to be something new every week and something might be apple to be applied to our select group.
4. Write down every day how you are responding to the chemo. I noticed a pattern - when I feel tired, when I get a dry nose/mouth, so you can pre-empt the symptoms. Be VERY vigilant on the water drinking - important to flush the toxins out of your body - I was not and according to google, liver damage is the result. I have slightly elevated liver blood numbers. I have days 4,5,6 as tough tired days but I make myself go for a short walk. Chemo is day 1. The first round is the worst as you do not know what to expect, after that it is OK.
5. The Mayo offer a lot of support. I'm personally disturbed by the title of "Pallative Care" but they have been great. I'm getting Trauma therapy - which I wish I had had years ago.
6. I am also using a lot of "Alternative Therapy" I do Qigong exercises, sound healings, reiki, and I have just met a healer. I also do Chakra meditation, all care of "you tube" I could not get on with "headspace" I will go and have reflexology later today as well. The Mayo are connecting with me with an "Alternative Therapy co-ordinator - scheduling is out a few months. What I can say is I will take all support that comes my way. I have found this together with the Trauma therapy has really helped me mentally and I'm sorting out a lot of past family trauma - a great relief not to have those people in my head anymore. It has been hard pivoting from this is "incurable, aggressive cancer and you have 18 months" to " I am going to do everything to get in that group who do survive five years or more." I spoke to a surgeon privately and he was telling me they have "a lot of stage 4 breast cancer patients" who are being able to maintain that position for five years or more... with drugs - so this may be incurable and they have not developed a protocol for our cancer yet...but if we can stop it's growth.. I'll take that.
7. Think about the quality of life. My husband is more I want us to be able to play golf and enjoy our time together. So with that I've said to my oncologist we need to think about some chemo breaks so we can travel and visit our children. The times I am vulnerable, not to be so fearful and isolate so much - but be careful.
8. The oncologist asked me not to go on any "crazy" diet. We eat healthily but what comes out of any book on the subject is aim for plant based whole foods, eat for nutrition and colour, cut down on processed food and meat. I have a friend who supplies me with fresh pressed ginger every week and I take a ginger and sparking water every day. The Mayo mentioned increasing fibre intake - a lot, we already were but bean salads are in my meal plan now.
8. I am writing this from a positive position. I feel I can breathe better in my left lung - I think the fluid is less which I'm hopeful shows the chemo is working. Mental attitude is really important - accept the diagnosis but not the prognosis the statistics are just that. Still necessary to take the practical steps of getting stuff in shape. There is so much changing, I signed up for every clinical trial they asked me for. Getting out in nature and trying to live in the moment - I'm a planner so I've found this hard.
9. On my next to do list is to join a support group, and get my husband to join one too. Learn to use my voice.
10. Big scan is in three weeks and we find how far the chemo had worked. I'm hoping it does then I will have another couple of rounds - 6 in total before maintenance/chemo holiday.

Anyone on the chemo maintenance plan - I understand it is an infusion of pemetrexted every 21 days - how is that working for people? how long were you on it for?

Appreciate anything anyone can share.