Mesothelioma

A place for people affected by mesothelioma to get together, ask questions, share experiences and support each other.

Mesothelioma and chemotherapy advice

sarajj
Posted by

Hi!

I am new to this group this morning as my dad has recently been diagnosed with mesothelioma.

He was told from the outset that surgery and radiotherapy were not appropriate and that chemo would perhaps slow things down.

Since diagnosis, he has had some breathlessness which has been largely relieved by a procedure that I can't remember the name of. Done under General anaesthetic and has left him with a permanent chest drain which needs to be emptied twice a week but only a tiny amount of fluid comes off each time.

His main symptom is pain. He is on a huge concoction of pain killers (gabapentin, naproxen and oxycontin being the main ones) but is still needing lots of the oxynorm for break through pain.

Dad is currently on a palliative care ward at his local hospital to try and get on top of his pain and they are really trying to find a cocktail of drugs that makes him comfortable which is great.

His oncologist has said she would like his pain better managed before contemplating chemo which seems really sensible to us. Due to being on the ward and seeing / speaking to people in similar situations, he is now thinking that he doesn't want the chemo if it is offered.

Sorry this has turned out to be such an essay but is anyone out there in a similar position who has ant advice regarding the Chemo? Given his current situation, would you recommend giving it a go or suggest that he just tries to keep on top of pain. Quality of life as opposed to quantity of life.

Thank you for reading this

baseballmom1010
Posted by

Our Dr suggested starting Chemo ASSP to help with the pain since the pain was so severe. We decided on a strong dose (2 drugs) of chemo given every 3 weeks. The Dr said it was a very aggressive treatment He was also given methadone for pain. It seems to be the ONLY medication that gives him relief. Along with the methadone we do medical marijuana when he gets the sharp, stabbing pains. 

After 4 chemo treatments, we have decided the side affects are not worth it. He is sick, nauseous, dizzy, no appetite, fatigued, weak & tired. Quality of life was definitely NOT improving with the chemo. 

Dr suggested a single dose chemo - to see how he reacts. Being stage 4 Mesothelioma- there aren't many options. He had the weaker dose of chemo (single drug)  - Wed so tomorrow we should start to see how his body is reacting. Seems to always be around 4 days after treatment the body reacts. 

If he begins showing all the same side affects as mentioned early, I feel it's best to end all chemo and just stick to the pain medication and the O2 to keep him comfortable. 

No one should have to have added pain, nauseous, dizzy, weakness .......... when they are already going through so much. 

Seems a lot of people say they wouldn't go through Chemo again, given the choice. 

Recently read about B-17 and apricot kernels. Do some research on different ways to help him feel better and fight the cancer. 

suze99
Posted by

Hello and a warm welcome to the Macmillan community and tot his particular group. 

I'm really sorry to hear about your dad. I don't have personal experience to share but didn't want your post to go unanswered. 

I hope that the doctors manage to sort out his drug regime so he is pain free. 

This quality versus quantity issue is a really tricky one. I guess your dad's medical team are the best people to help out with advice over his condition and chemo. 

If you wanted to talk things through with someone out of the equation then you could always give our helpline a call during the week. The number is 0808 808 00 00.

Kind regards

Sue

sarajj
Posted by

Thank you so much for the reply. It is really helpful to hear from  people who are a little further on with treatment to know what we might expect. All the best for your next few days, I hope the effects are not too unpleasant.

sarajj
Posted by

Thank you very much. Support from people online really helps

gogodav
Posted by

Hi SARAJJ,so sorry to read about your dad. My husband, aged 67 was diagnosed in July 2016, stage 3/4, no other treatment possible except for chemo to delay symptoms. He had sessions of carboplatin and premetexed from which he didnt have any side effects whatsoever, not even a nausea. We even managed to travel abroad on holidays in between session. Probably his good health with no other medical issues helps him to go through chemo. The results were really good, his meso reduced to 75%of the original size. Now a year later the last scan showed that it has grown a little and he started chemo again a week ago, again with no side effects and being able to carry on a normal life. At diagnosed he didnt want to start treatment for the same reason your dad did,  but he decided together with the oncologyst to give it a try and we have a really good year, making the best of it. We are well aware that chemo is not curative and its only time till its not good anymore. He was given 18 month, and I count every single day, I look at him and I cant beleive he was given such diagnose because he doesnt show any signs of it except that he is short of air when climbing 3 floors of stairs, no cough, no pain. The only advice I can give you is to take each day and treasure every moment with him hoping we have our dear ones with us for a long time and able to live the best as we can with minor discomfort. This group is the right place for understanding, comfort and express your feelings. If you need to talk, feel free to contact me privately. We dont live in the UK and in my country there is not so much experience with mesothelioma. 

Hope your dad do well with the new treatment and can cope with it without adding more unpleasant symptoms. 

Gogo

Chezdouglas
Posted by

Hello .. my husband was diagnosed with Mesothelioma this May in 2 sites his lung and peritoneal apparently there is just 20 o/o of cases having it in these 2 sites. My husband has had his first Chemo and is due his second round on the 18th he has not suffered many side effects and says he feels better than he has in a long time.  It is so hard to accept that this is only palliative care and not a cure, we will be looking into trials as my research has shown lots of people seem to survive longer going into trials. We are devastated this has happened my husband is 61 and like everyone going along this journey we are praying we still have time together to make more memories sending love to you all xx

gogodav
Posted by

Hello Chez, welcome to the support group, hope you find comfort and not feel alone in this road. As you said, its hard to accept there are no curative treatments. My prayers for you and your husband, take good care of you two.

GogoXX

Reneree
Posted by

Hello Chez,

My husband was diagnosed in Feb 17.  So far he has had 5 sessions of chemo, cispaltin and alitma. He has been very tired with both of these drugs. The first one wasn't too bad but gradually the after effects have worsened. He has slept constantly now for three days only waking to eat and toilet care. His last one is on August 24th. He has said he would not have anymore after this and would just let things happen.


I don't know if chemo is the right thing to have after experiencing the way it has affected him.  We wil be having the results of his last scan on August 21st and will see what these come up with. I find this desease very debilitating and stressful. 


I find this group very comforting as it does help you to show your emotions to others and keeps you going. This journey is a complete roller coaster and my prayers are with everyone going through it


Best of luck to you


Reneree

Chezdouglas
Posted by

Hello Gogo 

Thank you for your message .. we are very new to this journey and it is nice to be able to speak to others it certainly helps.

Everyone one is in our thoughts and prayers xx


Chezdouglas
Posted by

Hello Reneree

You are like us new to this terrible cancer. My husband has had one chemo of Pemetrexed and Carboplatin.. from my research Pemetrexed has not so many side effects as Cispaltin although different opinions in which works better, he has done well with his first chemo but I do wonder if the more sessions the harder it will become .. I would like to hear from anyone who has this in the lung and Peritoneal like my husband. 

I know what you mean I was at a coffee morning and the lady sat next to me had lost her husband 2 years ago she said he refused to have chemotherapy and lived for 2 years, it is a very difficult decision to make .. We are Hoping there may be some  trials available that will benefit my husband time will tell.

I will keep you in my prayers lots of love x 


DenH
Posted by

Hello Chezdouglas

My husband died 14 months after diagnosis. He had three lots of chemo but had lots of side affects that he decided after the third session to stop the chemo.  He said what time he was gaining he was losing by feeling so ill due to chemo.   But he never felt well again and had bad hallucinations and delusions from the drugs.

I would say if you can get on a trial that may be the best for your husband.  I have decided that there isn't one case the same as another; my husband was poorly most of the time but others can be well and live for several years.

DenH

Chezdouglas
Posted by

Hello Den

Thank you for your message I am so sorry to hear your husband has passed on it's something that is always on our minds .. I think you are very right every case is different I have  read so many different types of journeys people have been  along ..it is like being on a rollercoaster every day brings something different. 


We are hoping my husband stays well but only time will tell he has only had one lot of chemo so we still have a long way to go .. I wish you all the best it is so hard when you lose a loved one ...,my first husband died from lung cancer so we are now travelling down the same road.


Take care 

Chez 



Daffodil72
Posted by

Hello, new to this group. Husband diagnosed with mesothelioma - it's been a long couple of months waiting for a definitive diagnosis. Not sure what to expect next, we know it's not curative and told can only buy time with chemotherapy. I'm just worried he is too ill for treatment. He's in his early fifties with teenage children who would love him to be around for as long as possible but are now just appreciating any time we get to spend with him x

DenH
Posted by

Hi  Chez

i am so sorry you are going through this a second time. I hope your husband stays well and you can enjoy a few more years together.  There are some stories of people living much longer than their diagnoses and feeling well and having holidays abroad. Wishing you and your family well.

Den