Mesothelioma

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

MARS 2 TRIAL

singo3939
Posted by

Hi Kaz,

We just got home from the hospital stay almost a week in. The CT scan showed disease progression into his diaphragm and his abdomen also tumour growth up  top of left lung causing the pain down his arm! Positive things it’s not on his heart or liver (yet).

He started chemo “ Vinorelbine” Friday gone he has it day 1 and day 8 in a 3 week cycle. He will have it again this Friday and then will have another CT scan around the 19 th Dec to see if it’s having any effect before he continues.

He has already tried a trial with the usual two chemo drugs plus Immunology drug which had no effect also he had 12 sessions of radiation 5 weeks ago with no effect. Poor thing! His cancer seems resistant to every thing!

He is home on the Niki Pump with a syringe driver delivering hydromorphone at 20 mg per 24 hour period. This has stoped his pain except for the occasional break through about 1 or 2 a day. But confined him to receive Silver Chain pallitive care each day. A nurse will come change his pump medication. Also he can’t swim or get it wet!

We are hoping after a few days we can convertback to oral tablets so he has more independence.

He is really out of it sleeping most of the time and just waking for meals then can’t keep his eyes open. I think the drugs are too high so will be talking to the nurse today. I hope she or he is good at listening.

I just wish and hope something changes in the positive! It used to be changed each month now it’s on a weekly basis. I suppose it will soon be daily.

All we can do is enjoy each day best we can.

How are you and your husband going?

I hope you are having a better time.

Thanks for being there for me.

Regards

Cathy

KarenMJ61
Posted by

Morning Kim75,

Sorry to hear about your Dad, I am looking at this for my husband and have read people are responding well to this type of op.  I hope all goes well and send my very best wishes.   Good luck x

kazm
Posted by

Hi Cathy 

Sorry to read ur latest post this terrible disease is so full of ups and downs one minute so thankful for a tiny bit of good news and next minute dropped right back down again. Thankfully my hubby is doing really good at the mo recovering really well and we r really positive. Hope u are managing to cope ok and trying to stay positive so hard when u keep being knocked back I know, 

Love to u all kaz x

kazm
Posted by

Hi electricsaint 

Thanks for asking 

Husband is doing really well we are managing to get out everyday even if it’s just to do a bit of shopping, managed a pub lunch today yay. Pain is not to bad is on paracetamol and tramadol 4x daily and lbuprofen and gabapentin 3x daily and occasional morphine in the early hours of the morning if in pain but managing to sleep in to about 7 am now instead of up at 4 am so definitely improving, how is ur dad coping with it all hope he’s managing ok and you all too 

Karen 

Electricsaint
Posted by

Thanks for the update! He's just had his 2nd bout of chemo and then waiting for a scan next week which goes off the the MARS 2 team in Sheffield. Please keep me updated on how your husband is getting on as it really helps!

Thanks!

kazm
Posted by

Hi everyone just wanted to catch up and wish u all a happy new year. Hubby is doing well and back on chemo next week although has a bad cough at the mo, saw oncologist last week and has had xray and all looks good, don't u just love winter hey, Have been back for follow up for Barts and thankfully all went well cancer was more widespread than we thought but managed to get it all out. 

Hi Singo how are you and your husband doing hope you had a good Christmas with ur kids 

Love to all kaz 

singo3939
Posted by

Hi Kaz and everyone. I have the saddest news my husband and father of 8 died 30/12/17. Diagnosed may 2017. Way too short of a life only 57. Was exposed as a baby he was born in a small asbestos mining town north west of Western Australia Witnoom in 1960 lived there till he was o my 4 years.

All our 8 children from around Australia and the world came home for Christmas. We made it up too Kalbarri on the 22 nd after a short stint in hospital with an infection. Gordon was on oxygen for the week and the infection came back 24 th of Dec. he was flown by flying doctors back to Perth. I drove the six hour drive Christmas Day leaving our 4 and 7 year olds with their siblings in Kalbarri. They returned on the 27 th.

Gordon initially responded well to antibiotics and panadol by IV. His pain management went to the niki pump and we planned to come home for his last few days on the 28 th but he had a bad turn and was dependant on 12 litres or more of oxygen so coming home was not an option. He was moved to a room of his own the Lotus room at Sir Charles Gardiner Hospital a plaintive Carr end of life room. He was still quite with it on the 28 th although just going to the toilet caused heaps of extra pain and exhausted him. Gordon then had a catheter put in to help. He ate ice cream for dinner on the 28 th and from then on didn’t eat only had sips of water on29 th. On the 30 th it was decided to reduce his oxygen and increase pain killers and a sedative to stop him feeling out of breath started at 1:30 pm. He sided by 5:30. 

It wasn’t where and when he wanted to die but it was peaceful and I got to lie with him and after gave him a cuddle on his chest which since May 2017 was not something we could do. I miss him so much and even forget he’s gone sometimes.

I really hope you and everyone else have a lot longer less painful ride.

My husband should not of had to endure such a aggressive, relentless, painful and horrific battle with this horrid cancer.

He was so strong amazing kind gentle, always the gentleman and always thanked everyone involved. He even said sorry to me and said to me that he now knew what unconditional love was.

It was only in the 22 nd of December when he turned to me and said “I think I’m sicker than I thought!”

By the 24 th he said to me he though he was dying! So so sad as I knew too. Then on the 26 th he said he was a bit scared! On the 28 th I asked if he was scared his reply was “Not for me!” Always concerned for me and our two little ones. He was the best and will live on in our love and thoughts.

kazm
Posted by

Hi singo so very very sorry to hear your news my heart truly breaks for you and your children. This is such a terrible cancer with so much pain and it's hell watching them cope with it all. My husband like yours is so much more concerned with me and how I'm coping with it all. Thanks so much for posting back it must have been so painful for to write. Sending you all huge hugs and love. Take care of yourself. Much love kaz x

singo3939
Posted by

Thanks Kaz,

I prey things will get better for you guys and all sufferes of Mesothelioma.

Take care of you.

marshian70
Posted by

Hi Lauren

Just going through this with my father who was diagnosed in January.  Was interested to see your comment regarding your Mum having the P/D operation privately - where was this please and do you have any idea of the cost?

Thank-you

lou75
Posted by

This is a truly heartbreaking story. My thoughts are with you. Such a cruel unforgiving disease. 

Stay strong 

X

KarenMJ61
Posted by

Dear Singo3939,

I have just read your very sad post about your dear husbands last few days with you.

I lost my husband on 22nd February, 4 months after diagnosis.   I still cannot quite believe what happened to us, to him, we were just learning to try come to terms with this awful terrible disease when it fiercely took its grip of him.

We had made it through two rounds of chemo but the pain wasn't going away and was just getting worse and worse.  My Norm was on a concoction of drugs that was so strong he shouldn't have felt any pain at all.   I have now been told by a friend who trains pharmacists that it was enough to fell a horse !   I think in his last week he was also beginning to think that the chemo wasn't working, I tried during this time to keep his moral up and tell him I thought it may be because the tumour was shrinking !

I am still trying to come to terms with what has happened to us, to our journey which I feel shouldn't have ended.

He shouldn't have gone through this, I am trying to take comfort in the fact that in his last hours he wasn't in pain and I think passed quite peacefully with us all by his side.

We were also at home together right up till I raced him into A&E as I was so scared, but at least we had time together in our home and in the garden sat in the sunshine.

Like your own husband, Norm was strong and remained strong and brave and determined to try and fight back.   I guess the pain was just too much to bear and although everyone keeps telling me at least he is at peace from the pain, my heart still aches.

I lay with my head on his chest and my arms around him for the first time in at least 4 months and cried for our lost hope.

Keep strong

Karen xxx

singo3939
Posted by

Hi Karen,

Sorry for your loss. I’m so sad you have had to go through what must seem like a night mare. It’s been almost 3 months since my best friend and husband died and I still go through all that happened in my head especially at night. I had a bad week last week just sad and missing him. I know we must go on but this doesn’t stop the pain of loosing a loved one. 

It’s such a difficult time and I would like to thank you for your post. It helps to know that there are others who are going through such tuff times too.

I read your post to my daughters and they asked how old your husband was and if you had kids. And where he was exposed and where you live. I think they could relate to you too.

We live in Perth WA in a suburb called Ocean Reef very close to the beach where my family including Gordon belong to Mullaloo Surf club. Gordon myself and older girls all were patrol members. We live an active life and on good days all Gordon wanted to do is go down the beach and walk along. Or walk our young ones to school. It was the simplest things in life that Gordon enjoyed the most.

We also had another tragic death in our family, my husbands father took his own life exactly one month after Gordon’s death. I don’t think he could stand the pain and heart ache of loosing his son, he thought it should have been him not his son as he was the one who took his wife up to the asbestos mining town and started their family. This death so soon after my husbands made everything so fresh again.

I hope others are having a much more positive less painful time.

Karen hang in there and if you can let me know how your doing.

Regards

Cathy3939

kazm
Posted by

Hi karen so very sorry to hear about your husband hope you are keeping ok

Love and hugs to you 

Karen x

KarenMJ61
Posted by

Hi Cathy,

I have sent you a friends request so I don't hijack Kaz's post 

Love 

Karen x