MARS 2 TRIAL

Sounds great Kaz!!!! I do hope my dad at least gets offered the surgery on the MARS 2 Trial. Hes got his 2nd cycle of chemo next week and then a scan.  

Hi so very sorry to hear about ur husband so sad with kids so young our youngest two are 14 and 16 and oldest 28 so understand how ur feeling need them to be around as long as possible. My husband had an extended pleurectomy discortication he is on the mars 2 trial which is a randomised trial which thankfully he got chosen for the op. Sorry for the late reply but he got home today after 10 days in hospital. Best wishes to you and your family

Karen x

Kaz

How is your husband doing after the last update?

Hi Kaz thanks for asking.

My husband is ok we go to a clinic visit today and see the oncologist and also have an appointment with the palliative care team re pain management.

Over the last week or two his lower chest has been painfull in his left side, different to the usual pain in his back where his main large tumour, that’s into his 6 th rib. He has also been bloated in his abdomen very tight. ( not cindtipatiin) so we will see what this means! I’m hoping it’s not now inhis diaphragm or worse into his abdomen!

I’m so worried and scared. And all this just means more pain for him!

I’ll let you know how we get on.

How are you doing? Please let me know how your hubby is travelling too.

Regards 

Hi husband is doing really well have managed to get out everyday bar one when we just fancied a dossy day. Pain is becoming less each day and his recovery is remarkable so proud of him. He is already so much better than before and can walk further now breathing is a bit laboured but better than was. Thanks to everyone for asking after him so nice to speak to you all. How did you get on at the clinic singo hope everything went ok hospital visits can be so up and down with this terrible disease always feel so panicky with them back at barts in a couple of weeks for outcome of op as removed lymph glands and sent off to histology but told  this is standard with this op and mr Waller was also very pleased with how op went at the time and had a pet scan beforehand with nothing showing up so I am NOT gonna worry this time ( hopefully) we gotta have a little faith hey! Best wishes to u all

Karen x

Hi Karen and everyone,

Not such good news for us!

Gordon was admitted at the visit to oncology he has Prof. Anna Nowak as his specialist and she is great. But bad news all his symptoms: bloated abdomen, finding it harder to breath and out of breath in small exertion, low red blood count, sweats all the time and load of it, increased pain not just from the big tumour in his sixth rib which we can see under the skin ( about 5 cm round)and from his left Lung which is lung locked but new pain down lower chest/ abdomen also pain at left shoulder and down left arm sometimes.This means the cancer is progressing.

So into hospital for tests CT, blood transfusion, pallitive care who look after his pain medication have put in a pain pump delivering hydromorphone on top of his usual medications to see just how much he needs. We will find out more today!

I’m scared and worried feeling all alone in this my adult children 4 live away around Australia and one is over seas in Qatar. My other two are helping with the youngest 4 and 7 years but finding it hard to be at the hospital and run the house plus be there for my kids and answer all the questions from family especially my husbands family are a bit demanding. I know they mean well but it all takes time and effort that I’m running low on.

I sound like a bitch but I’m not just a bit tired, I just need to breath and hope for a positive.

My husband is so strong and says it is what it is! He’s still thinking he might go back to work!

I’m just glad all the kids and grand kids 5 are going to be coming home over the next few months. And I hope Gordon will be well enough to go do what he likes with them. That’s walking on the beach, he’s never asked for much and always been so well it is very hard to watch this man I love fade away.

Luckily he is a fighter and will not give up and he has more hope than me he’s my rock my North, South East and West. He just needs a break nothings worked so far!

If anyone has any ideas please let me know.

Sorry for the rant, I’m sure I’m not the only one going through this but it is lonely.

Regards Singo

So very sorry to hear about your husband don’t apologise for the rant we are all the same and in the same bloody boat it’s so hard to hold it together and keep strong for our other half’s and kids normal life has to go on and we need somewhere to let rip keep strong honey u r stronger than u think we all are, we have to be 

Karen x

Hello singo3939

So sorry to hear about your husband my heart goes out to you.

Have you read about Paul Kraus? He has lived with meso for 20 years through healthy eating, his story is very inspiring also watch chris beat cancer on youtube, at this point anything is worth a try.

My dad has meso also so i know how hard it is on everyone.

I wish you lots of luck, sending hugs, keep strong

Love Paula xx

Kaz

How is your husband doing after the last update?

Thanks

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