Mesothelioma

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

Alternative treatments...?

StaceySedgwick
Posted by

Hi everyone,

My dad was diagnosed in March of this year with mesothelioma.

We were all devastated and its been very difficult to come to terms with.

We thought chemotherapy was keeping it at bay but now his consultant has said this isnt the case.

Has anyone had a positive reaction to any other types of treatments?If so I would love to hear from you.

I hope everyone is doing okay.

Stacey :-)

always happy but now sad

Hi Stacey,

I'm sorry to hear that your dad is suffering from the same cancer as mine.  My dad was also diagnosed with it in March but he has not taken any course of treatment as he didn't want to weaken his immune system and that fear alone stopped him from having chemo. I wanted my dad to try photodynamic therapy, it is being tried at Royal college hospital in London, but even that has its drawbacks as it only seems to be in its infant stages of testing. apart from that there doesn't seem to be too many positive reactions to treatments.  Its an awful disease and watching my dad just deteriorate every day is the hardest thing ever.

I hope you can find some kind of treatment which may help, if your dad wants to talk to someone in the same position then I would be happy for him to talk to my dad, if that would help at all.

I'm not sure if this helps, but hope it does a little.

take care, God bless.

Laura x

 

 

Oxford Woman
Posted by

Hi Stacey

I was really sorry to hear that the chemo hasn't worked for your dad.  I can't speak from personal experience, but you might find it helpful to go to www.mesothelioma-and-me.com, where you can read about Debbie's experience with chemoembolization - a technique being pioneered in Frankfurt - and also mistletoe treatment.  

Debbie is very helpful.  I can let you have her e-mail address if you like. Send me a PM.

Linda (Oxford Woman)

StaceySedgwick
Posted by

Hi Linda,

Thank-you for your reply.

I actually read about Debbie's experience on Friday night and forwarded the article to my dad. Her email address would be fantastic, thank-you.

What is mistletoe treatment please?

My dad is so frightened its heartbreaking to see him like this. I wish it would all just stop and he wasn't having to deal with this. He's such a lovely man, why does it always happen to the good ones?

Hope you are ok

Xxx

StaceySedgwick
Posted by

Hi Laura,

My dad was quite lucky with his reaction to chemo with regards to feeling unwell etc...he was quite grumpy for a few days after and felt a bit sick sometimes but other than that he was fine. It's such a shame it hasnt worked. I really hope this new treatment has some effect. I seriously don't think he could cope with more bad news.

What is photodynamic therapy?

I'm scared he's just going to give up the fight and I can't lose my dad, I just can't.

I will ask him if talking to your dad would help but to be honest he is quite shy.

Your message really helps, although it breaks my heart to know another family is having to deal with the same things mine is, its good to know someone else knows what we are going through.

I hope you are okay Laura,

Stacey xxxxxxxxx

always happy but now sad

Hi Stacey,

Thank you for your reply, it is truly awful we have to watch our Dad's suffer in this way. 

Photodynamic therapy is a form of light therapy, they inject some die into the cancerous area and then they are laid under  strong lamps and the light invades the die which only clings to the cancerous cells and destroys them. Only trouble is the unknown side affects as it is still being trialled.  and it can only reach tumors which are close to the surface as the light has to penetrate it.

I wish there was an amazing drink they could take and just rid themselves of this disease.  Is your Dad's lung full of fluid?  My Dad's lung has about 5L inside it and has totally collapsed his lung he was draining it daily but the tube got blocked and had to be removed. so now he just has all this fluid on his lung, the drs said it may be dispersed through his urine but not sure if thats happening.

I sympathise with you Stacey and how you feel right now as we are in the same position.

private mess any time and we can support each other through this or at the very least help to answer each others questions.

Take care, God Bless

Laura xxx

DAFFIE
Posted by

Hi Stacey

So sorry chemo hasn't helped your Dad.  My husband is having chemoembolisation at the clinic in Frankfut where Debbie was treated.  She has been a great help to him, giving him contacts for Professsor Vogel, and practical advice as to how to get to the clinic, and where to stay in Franfurt.  I am sure she would be happy to talk to you if you use the link in the previous post.  It is very early days, and I don't dare hope for too much, but G had his second treatment on Wednesday.  The first treatment shrunk the tumour by ten per cent, which apparently is a good first result, so we can only hope and pray for further improvements.  The set up in Frankfurt is so different from that in the UK.  Everyone at the clinic is so pleasant and helpful and they really do seem to care about their patients.  I hope your dad can be accepted on to the programme. It is certainly worth checkng it out.

Best Wishes

Daffie

 

locovan
Posted by

The trouble is this is such a nasty one that there is no real hope but I keep fighting and that is the answer to have a positive mind.

I was diagnosed in March too but I have had to have the fluid drained and the Talc op at Guys in London.

I have just had the drain taken out and been on 2 weeks holiday and came back to a Kidney Function test friday with the hope my only kidney will get through Chemo.

I have to have my wounds Zapped with Radiation on the 8th of October.

Then the Chemo will start.

I have put my blog on to help to let others see you can get through with a lot of laughter and a lot of help from friends and family.

I wish your father well and to be able to keep going --dont give in one day they have to be able to cure this --we may be the ones.

DAFFIE
Posted by

Hi Locovan,

First of all sorry if i've got your name wrong.  Mesothelioma is such a vile disease, my husband has it, he was diagnosed this time last year.  As you can see from my last blog, he is now having chemoembolisation in Frankfurt with some sucess, although there is still a long way to go.  This time last year he was so poorly, after having his lung drained and the talc op that the family were afraid he wouldn't see Christmas.  He had six cycles of chemo at three week intervals after a week of radiation to the operation site.  He was given cisplatin which I believe is a general lung cancer treatment, and alimta which is more specific to mesothelioma.  He responded well, and has been in remission ever since, which I think has surprised the medics who had all but written him off.  In fact as I write, he is up a ladder cleaning out gutters. The oncologist had the gall to tell us he was "lucky" as at that alimta wasn't available across the country, but I understand it is now.  He came through the chemo with only minor problems, tiredness and  metallic taste being the worst.  His hair thinned, but he didn't lose it all.

I do so hope that you get your chemo, and that it works for you.  Staying positive and being determined to beat it for as long as he can certainly seems to have worked for G. 

Best Wishes

Daffie

locovan
Posted by

Thankyou for this reply as you are the first person to talk to me outside of the hospital.

My whole time is  taken up with hospital visits.

I have put my blog up now so my story can be read and I have had a lot of laughter amongst the doom and gloom which does all help.

Im having the same Chemo as your husband when it starts but I have to have my wound zapped first on the 6th oct.

 

Im able to walk the dog every day so i hope to be able to continue to do so and to go away camping as I try to keep life normal for my husband.

Bless he has been so good caring and worrying every step of the way.

Kindest Regards Mavis

 

rgilley
Posted by

HI DAFFIE MY HUSBAND WAS DIAGNOSED IN JULY 17 WITH MESOTHELIOMA HE IS 56 AND HAD JUST TAKEN EARLY RETIRMENT ON JULY 10.

HE HAD 4LT DRAINED AND THE TALC OP, HE HAD THE TUBE IN FOR 6WKS AND 3 GOES OF RADIATION HE IS NOW WAITING TO HAVE CHEMO HE HAS TO SEE THE ONCOLOGIST ON THE 6TH.

YOU SAY YOUR HUSBAND IS IN REMISSION, I THOUGHT THERE WAS NO CURE FOR MESO WHEN WE FIRST WENT TO SEE THE DR HE TOLD MY HUSBAND HE WOULD HAVE ABOUT 12-18MTH.

HAS YOUR HUSBAND GOT IT IN BOTH LUNGS?

WE ARE COPING BUT GET FRUSTRATED WITH ALL THE PAPER WORK THAT YOU COULD DO WITH OUT BUT IT HAS TO BE DONE.

ROS

locovan
Posted by

Can I answer too Ros.

I had 5 ltrs drained from my lung and the another 4ltrs drained through the next days in hospital.

My Talc op seems to have worked and Im having all the wounds Zapped next week.

There is no cure but we musnt give up hope must we as i cant accept i will be gone before 2 years, I will fight to the end thats for sure thats why I have started a group-- Mesothelioma Struggle --on face book and a blog here. and on my web page.

You only get it in one Lung always the left lung I thought and mine is on my chest wall now as the Tumour seeds-- looking like smarties the Surgeon said.

I have been doing all the paperwork too and as you say it is not good as there is so much as well as an endless travel to hospitals.

What ever money we win and get from the Goverment it cant make up for this man made desease.

I see asbestos all around still and i hope people are wearing masks when around the stuff.

I do hope your husband is feeling ok and not suffering to bad-- as i try to live a normal life and enjoy my family and the time we have together.

I have got all my affairs in order and I have bought sheets and all sorts of things even a new oven today.

I have taken nets down and put up blinds because I cant trust my husband to think of things so I have made life as easy as possible for him bless him he has been such a rock to me and we talk all the time about it all.

I hope you cope well it is so hard.

Mavis

rgilley
Posted by

hi mavis reading your letter saying meso only attacks the left lung my husband has it in the right lung that is where the drain was put in.

i would like to take him on a holiday but am frighten he my be taken bad , we cancelled a holl to the dominican in sept, i fell even if it was in england it would be nice .

it will depend on when the cemo starts if the dr says right away then i think he will wont to get on with it.

do you get the night sweats he wakes up socking and in the evening he gets the shivers, another side afect is his bad breth we have had to by lots of mouth wash i think it is coming up from his lung.

we seem to just get on with it then the soliciter comes and has to talk about it then we get so emotional and it takes us a few days to destress.

take care .

ros

locovan
Posted by

Im sorry it just goes to show I dont know all the story on Meso.

Yes I get night sweats infact Im always saying its hot and Ray is saying its cold.

Yes I get a smokie sort of taste in my mouth at times and feel it is coming from my lung.

I cancelled a holiday to Italy as I didnt have any confidence and would have been worried all the time.

I have been on holiday but in England though --for 2 weeks and it was great.

The McMillian Nurse agreed that  a holiday would be very benificial to me and she agreed I should go.

I get distress when I get back from weekend camping rallies as everyone is so full of best wishes and I realise I will be taken away from this great hobby, so I panic and hate this terrible desease.

Thats why i wrote a blog so as to concentrate my mind on something.

Im going today to buy a big telly as I said that if Im going to stuck in doors more then I will treat myself.

I take it that on Chemo I shouldnt mix with a lot of people so I will be in doors more.

Emotions go up and down all the time and I try not to say to much to Ray but he is being very strong for me.

I have Chem on the 12th and I cried when I got that letter as I feel it is giving me a chance as you never know one day there might be a cure.

Goodluck to you and your husband

 

 

 

 

rgilley
Posted by

hi mavis many thanks for replying, i also have had sky sports added for my husband so in the winter he will injoy the golf.

we have a caravan in cornwall  and love are weekends there it is so peacefull we have put it away now as the season has finished.

ros