Mesothelioma

A place for people affected by mesothelioma to support one another, ask questions, and share their experiences.

Doing well after 18 month

gogodav
Posted by

This is an update on my husband, age 68, condition, diagnosed a year and a half ago, with a prognosis of 18 month with chemo paliative care.

Since then he has been doing really well, after the first chemo cycle of 8 sessions meso shrunk to almost 80 % or original size, and as today, with a second cycle of 6 more session ir shrank further 5 %. Along the way he never had any chemo side effects, being his usual self, no complications, no pain no discomfort. He had his scan and xray 10 days ago and it showed good response to Chemo so the oncologyst send him for 3 more sessions to reinforce the results or may be to reduce it even more. We know he is one of the lucky ones, or his overall health is very good and doesnt have any other issues and it wont last forever but just thinking that given 18 month and he is so well after that period  it gives us  us and any other members going through chemo, hope and encouragment to face any treatment being paliative or not. We all go from scan to scan every 2 or 3 month, dreading the moment we sit in front of the doctor to hear his report.  Since diagnosed we were able to live a normal life, managed a couple of long trips abroad, play golf from time to time and weather permiting. Also I think his possitive thinking helps him and us as a family to carry such a diganose and eventual outcome on our shoulders. 

This message is just to give hope to all members going through such a terrible time, and not let the prognosis run your lives since we dont exactly know when the time will come. 

My prayer are for all the sick and families in the forum,  to have the strengh to cope, to be able to give love to our dear ones and be there for them. Many lost the battle in a few month, others are still fighting and my heart cries every time I read about people we love so much end their lives in such a terrible way.

Thanks to everyone in the forum to let us express our feelings, no one better than we know what we are going through, moments of dispair, or happy moments with good results at least until new studies performed.

Thank you all for being there.

Gogo XX

myosotis
Posted by

How wonderful to hear your news! My husband has just had his second chemo and there is no doubt that he is fatiqued. Last time he began to pick up after day 8. Its so good to hear that you have beaten the prognosis. Please keep going and enjoy life as we are aiming to do.

All good wishes

xxx

gogodav
Posted by

Hi Myosotis, Im sure your husband will do well and also respond to chemo. Im well aware that chemo results wont last forever but we try not to think about it and as you said enjoy life.

We dont live in England so we dont have so many Mesothelioma specialized hospitals or oncologyst and there are not so many cases here. Thank God we have a good private health care with one of the best oncologyst in the country who treated some cases and two of his patients are well after 4 and 7 years. 

Take good care of you both, and hope your husband starts to feel better shortly.

Gogo XX

Tartanpet
Posted by

Thanks for posting.. wonderful news. Very encouraging. x

myosotis
Posted by

Dear Gogo

My husband is now sleeping soundly , although it is 10:30 in the morning. He has relatively little pain but lack of appetite and extreme fatigue. This is day 5 so we know that things don't improve until day 9.

However we are very confident in our oncologist and we will see what happens next after the sixth session (he has had 2).

I really think that positivity is so important and we try to put a positive spin on everything that happens.

Thank you for your very kind thoughts

Myosotis xx

Marhen
Posted by

It was very encouraging to read your post towards the end of a Sept my husband Henry came back from playing Golf very breathless , went straight to doctor who sent him up for X-ray,  within 2 days he had a 2 litres of fluid drained, off. He was fine for a few days then it started again and they drained 2.5 litres off.  And could see something from the X-ray so they took biopsies which were inconclusive.  Within days they sent him to The Royal Brompton in London where they delved in deeper to take samples and came back with a permanent drain and a diagnosis of Mesothioloma Yesterday he had his 4th out of 6 chemo sessions.  

He had a ct Scan last week.  And hopefully get the results today. 

It’s hard to believe all this is going on as he,s still playing golf 2/3/4 times a week weather permitting no problems at all 

We had a cruise booked for March 9th to Northern Lights But his Chemo finishes 3 days before so thought it wasn,t wise to go to a place that will be very cold,  so changed. It to one in June. 

Our problem now is getting insurance.    

Hoping to get a letter from Hospital that he will be okay to travel.     

Nice to read about other people in similar situations although none of us wish we were 


FlossyBear
Posted by

Thank you for this lovely post - I am really glad you and your husband are doing so well.  Congratulations on your positivity.

We are off to the consultant with Dad next week for his 2nd visit so this news will help me keep on the bright side.

FlossyBear
Posted by

I would be interested in hearing how you get on with travel insurance for a cruise - we have one booked for June to the Canaries with Mum and Dad. 

They want to cancel but we are trying to persuade them to go as we are sure the break will be good for both of them.  They are seasoned cruisers so there will be no surprises on board apart from not climbing the stairs after muster with a life jacket in hand - not ideal when your lungs are letting you down.

We don't have to pay the balance until the end of February so there will probably be a couple of scans/oncologist visits before we have to make the decision.

gogodav
Posted by

Hi Marhen, thank you for your post, like your husband, mine, Charlie,  also felt some breathing discomfort when playing golf at diagnosis and also when climbing stairs or walking uphill. otherwise he felt fine but on his annual check up fluid was found on the xray and within a few days, biosy, scan and all, the results came possitive for meso. Very similar story, his breathing discomfort went away after the 3rd chemo and since then he didnt have any related syntoms, that was in November 2016, his lung went back to normal expansion and no more fluid built. Also he didnt have any chemo side effects, and he went to play golf the next day. Regarding trips we went to Europe twice since then, with long 14 hs. flights, and thank God we did well, we both caught a flu but thanks to over the counter medication we got rid of it in 3 or 4 days and didnt prevent us of driving all around. Anyway before we travel we had an appointment with the pneumologyst just to be on the safe side, who said there was no impediment regarding travelling because he had a good oxigen entrance in his lungs. The only drawback was when we came back from the trip and had his scan performed and found a clot in this pulmonary vein, (trombosis) due to the long flight, its call tourist class syndrom for being sitting for long hours on a plane, mixed with chemo treatment which makes the blood thickier, but he didnt have any symtoms of it and it was found just because he the routine scan for meso. He was put on Heparin (anticoagulant)  for 3 month and and disolved with no other complications, and now he has a maintainance dose while going through chemo. So dont be affraid to travel, your husband will be fine, just take medications with you like cough medicine, antibiiotics and a mild painkiller just in case and they are not easy to get them without prescription.

I know what you mean about travel insurance, most of them if not all dont cover preexistant health issues. 

Its really incredible how your life changes from one day to another, and how we now give priorities to things we took for granted before. We tried to enjoy life as much as we can, not giving second thoughts to things that dont deserve our concern. 

Im sure you will be able to fully enjoy your cruise in June, and todays results will be very encouraging to keep fighting. Please let me know the good news!!!!!. 

Take good care of you both and Im here if you need to chat. For me its easier to do it in the forum group since everybody fully understand what the emotions are , the worries, and the heart pain of dealing with cancer diagnosis, something tha friends and family maybe are not fully aware or maybe because we dont want to burden them with our inner thought.

Love,

Gogo XX

Marhen
Posted by

Will do am determined to go as might be our last one.  Thought we were seeing an oncologist today with the result of CT Scan, but it’s someone from Mc Millan

myosotis
Posted by

Fingers crossed for you!

Myositisx

Marhen
Posted by

Hi Gogo,  just thought I,d let you know how things went yesterday,  wasn,t the best things we wanted to hear.  The cancer has grown a little, and the blood clot on his leg has reduced in size and has travelled up to around his lung.   We didn’t see the consultant but a specialist nurse.  So he,s got more injections. 

She is going to send us some sort of letter that will explain the situation to the Insurance Company. 

I know when we came out my mind was just whirling,  Henry is more accepting of it than I am.    

He,s gone to play golf today,    It’s just a wait and see process I suppose. 

Regards 

Margaret. 

gogodav
Posted by

Hi Margaret, dont let this drawback run your lives, we know it can happen but with a bit of luck it will shrank by the time Henry finishes the chemo cycle like it did on Charlie. In his case it was a year before there was a minor growth after it shrank a lot, so that why the oncologyst decided for him to have another chemo cycle with the same medication and the response was good again. Please dont think we are in denial, we are very well aware of what can happen. Its good for Henry to go and play golf, also for you to have a few hours by yourself. In our case we are both retired so we spend much time together and its  like a rest for both of us to be on our own.

The clot  should go away with time, is he on Heparin ??(sorry I dont know the right word in english) Charly had this injections twice a day for 3 month and now has a pill as a maintainace dosis. Its rather common on people undergoing chemo but is something not to worry about too much as long as he is with anticoagulant medication. Eventually it will disolve itself. 

I assume the weather is nice if Henry went to play golf. Here we are on mid summer with temperatures running in the 36 celsius, to hot to play golf, we are having a heat wave so we better stay inside with the air conditioner on.

Take care Margaret of both of you, I will request your friendship, if you want to accept it, so we can chat more privately. 

best regards,

Gogo XX

Marhen
Posted by

Hi didn,t get much further re cruise travel.  Henrys mass has increased a bit, and the clot he had in leg has got smaller and travelled up to the lung.   He has two more chemo sessions.    We don,t have to pay for our cruise till end of February, going to the Norwegian Fjords.   The nurse is going to send a letter to us to show the Insurance companies what the situation is.    Hope we can do it as we are taking my sister who lost her husband to cancer last year at 60 and Henrys brother who lost his wife at 53, 6 years ago.  

Hope you manage to persuade your parents to go on the cruise.   

Cryptic33
Posted by

Hi GoGo,

Nice topic, I think it is good to remind ourselves that life is for living and we should make plans. Your husband is doing remarkably well and is a ray of hope to us all.


I was given 9 months without chemo and 12 months with it. I opted for surgery 13 months ago and my next course of action will be chemo on a clinical trial. So, you see I like updates like this because it shows that prognosis’s are worse case scenarios and that chemo isn’t always as bad as we think. I know everyone reacts differently, but it is still very encouraging. Thank you for sharing.


Keith x