Hi there All. I'm sorry that the last thread was closed as I found it really helpful. I hope some of you who were involved in the last one keep in touch. Thanks GaryR for you comments. Unfortunately, mesothelioma has been confirmed in my Dad. We are all totally gutted. He is due to start his next round of chemo next week. He is coping quite well with it so I just pray he is one of the lucky ones that it works on. We have had a bit of a struggle with the doctors though ranging from poor attitudes to mixed messages. We've 'parked' all these for now though and are just trying to focus on the things we can influence.
Hope things are going well - and hope to hear some updates soon.
Hi JP, So sorry to hear of the diagnosis. I'm writing this quickly because I'm about to go out for the day, but please look up carboplatin. it seems, is much to be preferred. The side effects are significantly less. My own dad has, fortunately been on this rather than cisplatin and, although 81, he has coped with it very well indeed, expecially compared with those on cisplatin. Keep strong. Gary
Last edited by moderator2; 08-26-2006 at 07:00 AM.
Thanks Gary. My Dad is already on the cisplatin but seems to have coped ok with it last time round. Was your Dad given any advice on catching his breath or night sweats, or any medication to cope better with the coughing?
I know your Dad is taking the zeolite drops. My Dad is sceptical but I really want him to take them. Do you think they are making a difference?
Hi JP, I can understand your dad being sceptical, so am I. Having said that there really are a lot of testimonials about that are quite amazing. It would be surprising if they were all fake, especially as they are from different sources. One I read was from someone with stage 4 mesothelioma and at the last count he was almost clear. The chap that I buy it from,Steve, as part of a buying group, lives in the south of england and his wife had inoperable kidney cancer. One of her kidneys was removed and over an 18 month period the cancer spread and she even had tumours in her lungs. After taking the zeolite for a while the cancer stopped spreading and the surgeons decided to remove the tumours. The last email I had from him said that his wife was now all clear. I have spoken to him and I am 100% certain that this is true. Another chap, Collin from Petersfield has also had good results and when he saw the lung doctor at Portsmouth hosp he was so impressed that the doctor contacted Steve, and he has now brought some , which he is going to recommended to his patients were there is nothing else they can do for them. You can also rely on this as being true.
As far as Dad is concerned he took it up to about his 3rd chemo and then stopped because the producers of the zeolite said that it removes the carbo/cisplatin. Even so when dad had a scan the tumour had shrunk significantly and he hasn't been in hardly any pain to this day. Certainly no need for pain killers. This afternoon he cut my lawn...which is much larger than the average UK garden. And he did it without any coughing or other adverse effects. He has now had his last chemo and on 10th sept i.e. 21 days after the final dose, he will resume the zeolite. He can't wait to get started on it again, and believe me, dad is a real sceptic about almost everything! He has also been taking Cellfood. You should look this up on a search engine. Others have combined Cellfood and Zeolite and the results are impressive. Cellfood is also much cheaper.
Now that the NHS treatment has finished I am nervous because besides the zeolite/cellfood there isn't anything else.
I hope that this helps you and anyone else afflicted by this disease.
Thanks Gary - that's really helpful. The results do seem really impressive. How do you get to access someone who is part of a 'buying group'?
My Dad has just had his second round of chemo on Thursday and was feeling a bit 'iffy' today but is generally doing ok.
I think he sometimes feels he's just been 'left to get on with it' and like your Dad (I think?), does not have 'religion' to turn to which could provide some comfort. His specialist nurse is overly sympathetic and is quite depressing because of it so he doesn't really like to talk to her about his feelings or worries. I am trying to get him to go along to one of the local support group meetings as I think he would benefit from talking to someone else whose going through it...?
Hi JP, Your dad is lucky to have you supporting him. External support, such as a specialist nurse can vary in its effectiveness. Dad has an assigned Macmillan nurse who seems to be quite good. He is also pleased with the various consultants and NHS support even though at first, in my view, it lacked a sense of urgency.
A support group would probably not work for him even though he could be great for many others. He's lucky to have my mum whom he says is the best nurse in the world. Concerning the buying group I don't know how I can put you in contact because the rules of this site prohibit such exchange.....I fell foul of that on the previous thread. Lets just keep our eyes and ears open (eeo).
You are right in your assumption that dad doesn't have any religious belief. The Zeolite and Cellfood are giving him hope and engender a much more positive attitude that would otherwise be the case. And now that he has had the last Chemo he is looking forward to being free from the side effects.
Hopefully all of our peers on the previous thread are doing OK. It would good to hear from any of you again.
Well I'm certainly going to try and get some for him for when he completes his chemo - which I hope will not be for a while as this will mean the chemo is working and so his treatment can be extended!
I really hope the meso keeps at bay once your Dad completes his chemo. I just keep believing that some people do defy the odds (like Antoinette who is a complete inspiration - and who I hope is ok?) and it sounds like your Dad is doing really well so far. They are making new discoveries each week with regard to cancer so who knows what is round the corner that will help people suffering with this awful disease.
Hi JP and everyone else. There hasn't been much communication of late which is a shame because in our shared suffering for our loved ones there can be encouragement. Having said that I know how hard it must be when events take a turn for the worse. The update on my dad is that his last chemo was on August 22nd and he resumed his zeolite and cellfood 21 days later. Last week we had a family holiday cruising on the med. It was brilliant and quite inexpensive, only £700 fully inclusive, including flights from stanstead. He thoroughly enjoyed it. His main complaint seems to be that he has a funny taste at the back of his throat and it prevents him from tasting food and drink properly. I wonder if anyone else has observed this sympton?
Otherwise he gets a bit breathless sometimes after walking about, especially in the mornings. Also he gets a little pain in his side when he takes a deep breath, but not otherwise. Besides this he still doesn't have any pain and is able to cut the lawn and ride his bike, which isn't too bad since he's 81 and last February they told my mum that he'd only got 6 months!
JP have you located a source for the zeolite? eeo is dialatv.
MY MOTHER HAD HER FIRST CHEMO AND WAS EXTREMLY ILL WITH SICKNESS AND WAS ADMITTED TO HOSPITAL FOR DEHYDRATION WE THOUGHT SHE WAS GOING TO DIE THEN THEY CHANGED HER TYPE OF CHEMO FOR THE SECOND ROUND AND SHE WAS A LITLE BETTER BUT STILL TERRIBLE NAUSEA SO SHE WAS DUE HER THIRD LAST THURSDAY AND HAS BEEN TOLD TO DELAY IT FOR A COUPLE OF WEEKS TILL THEY SORT THE SICKNESS OUT AND SHE HAS BEEN GREAT THE LAST WEEK NO SICKNESS AND APPITETTE HAS RETURNED BUT STILL TIRED ESPECIALLY MORNINGS SHE HAS VERY LITTLE ENERGY. BUT SHE IS DEFINATLEY BETTER THAN SHE WAS SHE COULD NOT EVEN GET UP OFF THE SETTEE AS SHE WAS CONSTANTLY EXHAUSED AND BEING SICK SHE IS AT HOSPITAL ON TUES FOR REVIEW AND SHE IS DEFINATLEY GOING TO HAVE MORE CHEMO I JUST HOPE IT IS DOING GOOD AS AT THE MOMENT SHE HAS NO LIFE SHE IS EITHER IN BED OR ON THE SETTEE AND JUST CAN'T BE BOTHERED. WE HONESTLY DON'T KNOW WHY SHE IS HAVING SUCH A ROUGH TIME SHE IS 63 AND NORMAL FULL OF LIFE. ALSO I CAN'T BELIEVE HOW MANY DRUGS SHE HAS TO TAKE AND SHE IS VERY SICKLY TAKING TABLETS. SHE SAYS PAIN IS PRACTICALLY GONE WHICH I HOPE IS POSITIVE. HER FIRST CHEMO WAS ATILMA AND CISPLAIN AND THE SECOND THEY CHANGED IT TO SEE IF IT WOULD HELP WITH HER SICKNESS. JUST CURIOUS WHAT OTHER PEOLPES SYMPTOMS HAVE BEEN WITH THERE CHEMO . sHE HAS THE PROBLEM OF THINGS TASTING TOTALLY DIFFERENT TOO !
Hi there. It's good to get an update from you and to stay in touch. My Dad is doing ok and his last scan showed some improvement in that the size of his lymph nodes seemed smaller (although since they did not take a scan just prior to starting his chemo it was hard to tell as the last scan was when he had a large pleural effusion). So he is going to continue with the rest of the chemo which is a huge relief. Since the chemo his night sweats have stopped which is great and I think he generally feels a bit better.
We all went to the first patient and carer mesothelioma day in Manchester last week. It was really helpful and had some good speakers. It was hard seeing so many others affected by the disease and some painful facts were presented during the day. It got us all riled up about NICEs decision due out the end of this month to not approve Alimta and we were urged to lobby our MPs which we will do. Also, the amount our Government spends on meso research is pitiful. It was terrible to hear how the truth about asbestos was kept under wraps - and apparently those who supply it are now targeting third world countries which is a disgrace.
My dad (whose 64) is in good spirits and has managed to play a few rounds of golf and is thinking about getting an electric bike as he loves cycling but needs some extra help now. We are off on a family break to London at the end of the month which he is looking forward to. He had to have a blood transfusion as he was anemic and it seemed to do the trick for a bit but he does get tired.
I'm going to hopefully locate the zeolite in time for my dad finishing his chemo and pray that they work. And I continue my search for any new developments/breakthroughs on an almost daily basis!
Something interesting. Dad has quite a few moles on his body as a result of sun exposure when he was younger. What is interesting is that recently they have been fading to the point of peeling off. I have just asked mum to look at his back and she said the same is happening to those on his back as well. I do believe that it is something to do with the zeolite and or cellfood, although he is also doing the Dr Clark zapper. And he is full of energy!
Hi Gary - are you sure that zeolite is ok? I've looked it up and found it is the cause of mesothelioma for some people in Turkey (although I know this is in another format (i.e. not liquid)). The last thing I want to do is to talk my dad into taking something that will hurt him (although I know you must have checked this out!). Are you genuinely convinced that it's benefitting your Dad? I have found a supplier and am asking about dosage. She has emailed back saying that contrary to stuff on the internet, it actually helps with chemo and is compatible - what do you think? Hope to hear from you soon. J.
Ansering your second question first, I have to say that I am not at all sure that the zeolite is working for dad. But he believes that it is and is very enthusiatic about it. I think it is too early to be definitive, but the indicative signs are very good. Dad was taking the zeolite during the first 3 stages of his chemo before I asked him to stop. And after the 3rd chemo the scan revealed what the consultant described as a very significant reduction in the size of this tumour. What I don't know, and haven't been able to find out, is if such a reduction is normal for someone undergoing chemo with Alimta. He stopped taking it because I read on an official zeolite site that the product removes platinum from chemo such as cisplatin or carboplatin. He started taking it again around 13th september i.e. 21 days after the last carboplatin was administered.
He is currently full of beans and in no pain. All he gets is an occassional pain in the side, where he had the biopsy in February, when he takes a deep breath. Sometimes he gets a bit out of breath after exercise, but he is 81!, and also a funny feeling across his chest. Otherwise all he complains of is that food doesn't seem to taste the same. This week he is thinking of swimming again.....he is an excellent front crawl swimmer.
My worry is that this could be the lull before the storm. I know that others, such as OTF, have reported long periods of little or no pain, but then it seems to bite back with a vengeance. I'm sorry that I can't be more defiinitive. Once I am convinced I shall shout out from the rooftops!
You should also look up the Dr Clarke zapper. It sounds nutty but I don't think it is, it's very serious and works out much less expensive than zeolite.
Oh, I forgot to say that Dad takes 15 drops 3* a day just before meals.
Concerning the safety of the product I have absolutely no worries. I also read what you are referring to and was initially concerned. However, I believe that zeolite is only a danger when it is inhaled as a fine fibre that lodges in the lungs. It then takes years/decades before it causes meso. The american FDA have certified liquid zeolite as safe.
Even if it were a risk, I would still encourage Dad to take it if there was a significant upside chance of him being cured.
I was disturbed to read what you said about the NICE ruling. Is there any info about it on the web?
Hi Gary, thanks very much for your reply. I want to start him on the zeolite now(!) but I guess we should wait until after his chemo is finished in Dec. The Dr Clarke zapper thing does sound nutty - and I'm not at all sure what my Dad will make of it when I tell him! - but I certainly will tell him as anything that has the potential to help must be considered. Is the cellfood ok to take during chemo (as far as you're aware)?
It really is disturbing what NICE are doing. You can read their report on their website. They accept that Alimta is effective but in their eyes, feel it is too expensive. It's a disgrace. They make their final decision at the end of this month and if they rule against it, Alimta will no longer be available except as part of a clinical trial. Given your fears about the meso perhaps coming back with a vengeance at some point in the future, you would want your Dad to again be treated with Alimta and it won't be available to him. There's a lobby of the Government on 17th Oct next week - so hopefully this will help.
My Dad is not feeling at all well today after his chemo on Thursday. It's awful seeing him like this. Hopefully he will start to pick up again tomorrow.
I'm really pleased your Dad is doing well. I've told my Dad about him and that he has loads of energy etc. so hopefully it will help convince him about the zeolite etc. I don't think such a big response to Alimta is usual - so your Dad is definitely doing something right! J.
JP, after I signed out from my last comments I noticed that the Dr Clarke zapper was being advertised on the that very same page of Healthboards!!
Regarding cellfood, yes it's OK to take during chemo. It is really good stuff that helps the fight against cancer but also I think that it's helped dad get thru the worst stages of the chemo. He takes 15 drops 30mins after meals. I got this from a guy with meso whose wife wrote on the web and described in detail how he'd got over this disease. Unfortunately I don't know what site it was on but it was when I was researching Cellfood.
Thanks for the info on NICE, I am about to look it up.