Hi - My 79 year old dad was diagnosed one month ago with this dreaded disease and had his second chemo treatment yesterday. He seems to be holding his own thank goodness. I am so afraid for him and for my mother who really has not had anyone outside of the family to talk to about our situation. My sister and I decided (along with my dad's doctors) to move my parents up to the northeast area from their home in Florida to see one of the top specialists who decided that surgery was not an option and chemo should be attempted immediately. Their entire life therefore has been disrupted and their entire support system left in Florida.
Thank goodness the family is together but I fear my mom is holding everything in. My dad is coping as best as he can and we are all trying to live one day at a time. We are also dealing with insurance companies, medical bills and litigation which of course adds to the stress.
If anyone is there to lend some support I would certainly appreciate it. Thank you and G-d bless you.
Last edited by laxmom981; 03-28-2006 at 04:11 PM.
I'm so very sorry that your father has meso and I pray that the chemo will work for him, that he will tolerate it well (many do) and that being close to family will help in his healing.
I know how terrifying a meso diagnosis can be. Please know that despite what you read online or the dire predictions of doctors that you can live a long time both with treatment and without. I've had it for over 10 years.
I know several others who have lived for over 5 years. Do not be discouraged and seek out the opinions of specialists in this field. That doesn't mean that your local oncologist can't handle it, it's just that most are not as familiar with the disease and will tend to throw up their hands sooner.
There is a wonderful organization called MARF (mesothelioma applied research foundation) that can provide you with excellent information about the disease, treatment options, latest research, patient profiles, etc. Just do a search for MARF online.
Please know that you and your family are in my prayers. Take care and if you have time let us know how things are going.
Antoinette - Thank you so much for your thoughts and prayers. I pray for you as well and hope that you are feeling better each day. Our lives are in such turmoil right now that it is difficult to keep the positive outlook that I know is so important in my dad's treatment and hopeful recovery. Each day is different and I am finding that as his reactions to the chemo change, my feelings and thoughts change as well. He is a fighter but I am seeing weakness in him which I am not used to seeing. Being almost 50 myself, I have to remind myself that I am not the little girl that needs his care and protection right now but I so want it. Today, he almost fell getting up from a chair - he wasn't dizzy but tired and I truly felt faint myself. Thank goodness his side effects from the chemo right now are manageable and he actually seems to feel better after the treatments. I think it is the great unknown that is the toughest part. I know I am rambling on right now but this is truly me just lettting out all of my feelings at once.
I have spoken with people at MARF and they are wonderful. I am sure I and my family will continue to use them as a resouce and source of comfort.
Again, I truly thank you for your help and I extend all of our best wishes to you and prayers for good health and happiness.
So sorry to read of your situation. It is certainly a horrible disease. My dad, aged 80, has also recently been diagnosed. He was so fit but now is tired much of the time, althought not in any great pain at all. The hospital drained 3.5 litres of fluid and then sealed him up so that the fluid won't reappear. He got 3 doses of radiotherapy within a week, but that's it. No more treatment. The consultant spoke of chemo but must have decided against it.
My mom is trying to be strong and look after him, but neither of them really know how quick the disease can take hold. I am their only child and I live 150 miles away but we will be visiting weekends as much as possible. In times like these there is an opportunity to draw closer bonds, and this is happening, not that we weren't close before, but this is a different dimension.
I have got him some Zeolite drops, which some claim can cure the problem. I have read one ****ger who has had metho and who says that the zeolite had an amazing effect. Quite frankly I am very sceptical but it has given dad some hope. He's only been taking it for a few days, so time will tell.
Hi Gary - I am sorry it has taken me so long to respond to your posting. I want you to know that you and your family have been on my mind and in my prayers. It seeems so strange to hear about all the different types of therapies patients are treated with. When I read about your dad, the first thing that popped into my head was why no chemo? Then I asked myself, why isn't my dad getting the treatment your dad has gotten? I keep reading and reading and asking myself whether we are in the right place and whether he is with the right physicians, etc. For now, at least, I have to say yes and be at peace with that. He will have another treatment on Monday and a week from Monday he will have a pet/ct and a ct to determine where he/we are.
We are truly living day by day and although we try not to let the disease take over our lives, certainly everything has changed. I am unaware of the treatment you say that your dad is on now but I also wanted to mention something that we are having my dad take. We okayed it with his doctors before having him take it and they call it a "complimentary" therapy. Coincidentally, there is a man in town who had been given a very dire prognosis when he was diagnosed with multiple myeloma. He endured 27 cycles of chemo and was given three days to live by his New York doctor and using his resources, he found the best doctor he could, relocated to Arizona and was given a stem cell transplant. He survived and ended up somehow coming in contact with somebody importing sea cucumber from islands between Fiji and Austalia. I know this sounds like a wacky story but my son went to high school with this guy's grandson, we know his family and he has been written up in many articles. He swears by this stuff and says that he has taken it every day and it has gotten him through two other cancers. He has a file of over 700 people it has helped. Apparently he is talking to Harvard, Yale and some drug companies about it and although it costs about $500 a month we started my dad on it about 2 weeks ago. It is supposed to help the immune system and boost energy levels and do many other things. The man's name is Walter Levine and you can look him up on the Internet. I am a believer in holistic medicine and Walter is the picture of health and a true miracle story.
I don't know if it will help in my dad's situation. I can only pray that what the doctors are doing, what in my belief G-d's plan is for him, and perhaps, the sea cucumber supplement will all aid in giving him strength to fight this horrible disease.
Again, I just wanted to let you know what we (I always say we but he is fighting the fight) are doing. Please keep in touch and my thoughts are with you and your family. Stacey
It was good to read what you had to say. The remedy you mention certainly does seem a bit wacky! But lets hope and pray that it works. Please keep me informed. How is your dad now?
I visited my Dad yesterday and so far he's doing fine. No real pain at all and he's still fairly active.....yesterday he cut the lawn. Also his breathing seems almost normal. On Thursday he sees the consultant again, but he isn't having any treatment at all beyond the 3 sessions of radiotherapy that he had 2 weeks ago. Having said that, he is very positive about the zeolite. This also costs about $500 a month. Whether it is working or not I don't really know. Time will tell and I'll keep you posted. He has been taking it for 10 days. If I sense that it doesn't work I'll be keen to know more about the cucumber. Let's keep in touch. Hopefully one of the 2 remedies will be successful.
Incidently Dad was diagnosed about the same time as your dad, although his lung started filling up in January and it was drained early March.
My Mother Was Diagnosed In October She Had Fluid Drained And Lung Sealed And Sealed I Live In Uk And They Have Basically Advised Her Too Have Scans Every 6 Weeks To See Progression And To Just Enjoy Her Life Now And Will Start Chemo When It Worsens Because They Basically Said It Won't Really Make A Lot Of Difference To The Condition And It Will Just Lower Her Quality Of Life . Since Then The Scans Have Not Changed She Seems Just As Active Although She Developes Side Discomfort On An Evening But She Seems To Be Trooping On ! Sorry Forot To Mention She Is 64 Years Old
Thanks for that info. It is good to know that after 7 months since diagnosis your mum is still doing OK. It's also a concern that the specialists have such inconsistent views about the best treatment.
My dad saw them again 2 days ago and he was advised to take a 6 part course of limited chemo. However, after 2 sessions they will give him another scan and if doesn't show any benefits then the chemo will stop.
It's unusual to hear of a female with this condition as it is more common to read of men who have worked in heavy industry and shipyards.
Hi everyone - I just returned from picking up my son from his first year of college. My parents took the opportunity to return home to Florida to take a break and collect some belongings and visit some friends and try to resume some sort of "normal" life. I am sure they felt like "cinderellas" as they knew they had to get many things done in a short period of time - see doctors, take care of paperwork, etc. It was a good time to do it though as my dad is facing a scan tomorrow after two rounds of chemo. We are all very nervous about the scan as the results will determine the following course of treatment. I ask you all to keep us in your prayers. My sister will be taking my parents into the city for the scans and the doctor will phone with results. If we get a positive result, chemo resumes on Tuesday. Again, I am a nervous wreck. I am thinking of all of you and pray for you too. Hope to report some good news. Thanks for listening. Stacey
I was just wondering about your dad and if the chemo was producing good results. Is he coping with the downsides OK, if so do you think that the sea-cucumber is beneficial. I don't think that I could get it in the UK as it is shipped frozen and would obviously thaw in transit.
The primary drug now being used in the chemo for this condition is Alimta. It does have significant negative effects but these are offset by folic acid and B12, which are all part of the treatment. Trials indicate that the treatment adds about 3 months to life expectancy.
On Monday my dad is getting his first chemo. I am worried about the side effects but hopefully they won't be too bad. After 48 hours he's going to start taking the zeolite again. Time will tell.
well guys she just had scan results and not good it has started to told engulf lung so looks like this is start of and end absoultley devastated i suppose with her being so well i just hoped this would never come . she is strong though will keep you posted on progression . take care
Hi Gary - I just read your post - it is almost midnight here so I am guessing it is around 6 or 7 am in the UK. I am thinking of you and your dad and praying for your family. I know that before my father's first chemo treatment we were all quite scared and really did not know what to expect. My dad is on a three week regimen of alimta. Every week he gets one third the usual dosage of cisplatin (they did not think he could handle all of it at once) and he started to receive something called evasten which technically is not chemo but a "targeted therapy".
I must say that he is handling the therapy much bette than we expected. The side effects are no where as bad as we imagined. He receives anti-nausea drugs and just as you talke about, he takes folic acid and gets B-12 shots. In addition, please try to get your dad to drink as much as possible after the treatment to flush the drugs out of his system. My dad has a problem with this and it is a battle for some reason. He also has had some trouble with constipation but takes some laxatives and stool softeners as prescribed by the doctor.
I do have good news in that the scan my dad took last week showed some improvement. Although the doctor was not very specific, he said there seemed to be a reduction in size of the tumor. Unfortunately, the doctor had two emergencies before he saw us and seemed to be very preoccupied. Our family was honestly disappointed with his reaction as we would have hoped for some "rejoicing" as this was a big event for us.
My dad seems to be going through some depression though and is insistent on having the doctor "stage" him tomorrow when we go for his regular treatment. The doctor told him many times before that after stage one, things are basically the same, but my dad is having some trouble swallowing and now he is thinking it might have (G-d forbid) gone to the esophogous.
I do believe in my heart the sea cucumber is working. I don't know how but at least as far as strengthening his immune system. If you would like me to talk to Walter Levine on your behalf, I would be happy to ask him about shipping because I know that he does ship all over. The sea cucumber is from Australia or the Fiji Islands and I know he works with people all over the world. My son picked up my dad's second batch last week and there were people in the office talking with him. Again, I certainly can't vouch or promise anything, I can only say that my dad seems to be less tired and stronger even while going through the chemo.
Please let me know how your dad does tomorrow. He and your family again will be in my thoughts and prayers. I wish you all well. Stacey
Hello to both of you. Onetruefriend, so sorry to hear of the bad results. I guess that your mum is still not been given any treatment. This is hard to understand because the alimta based chemo does extend lifespan by over 3 months on average. At first it didn't seem that they were going to give it to my dad, but they are doing now. It was only 5 days ago that he took the first treatment and after 3 days he was struggling quite a bit, but he seems to have recovered somewhat since then.
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I really don't know if the above is true or not, but it is encouraging. And I am purchasing some of the product from a man in Swindon, who I have spoken to, whose wife has inoperable cancer of the kidney that has spead to the lungs. After over a year of the cancer spreading, her last results were very positive indeed. He is in touch with others who also have some very encouraging stories to tell.
Stacey, thanks very much for your update. It does seem that our dads are at similar stages. It was very good indeed to read of the positive news that your dad received. After all why should a tumour reduce in size unless the treatment is working. Don't be too hard on the doctors, they are human after all and despite the nature of their work, it is still "work" that they do day in day out and they have their bad days as well as the rest of us.
With your dads immumity being low it could just be that your dad has a sore throat. I pray that it is nothing more serious. His depression is understandable, my dad also gets very down, but then rebounds back. Unfortunately he does not have any belief beyond this life.....that must make it very tough indeed.
He is forcing himself to drink lots of water, and also 3 cups of green tea a day. I know,from personal experience, that this does help with immunity, although perhaps not in a big way.
I do want to get dad something that will have a bigger effect on his immune system and I've taken another look at the sea-cucumber as well as MGN gold. I've yet to decide but keep me informed on the former.
He has another scan in about 10 days. I'll let you know how he's doing.
Both of you......keep strong for your parents sake.
PS Stacy, how long do your dad's chemo sessions last?
Last edited by moderator2; 05-21-2006 at 11:06 PM.
Reason: please do not copy from websites, as per the posting rules
Just a quick note in case it applies to anyone reading this. I've had a chance to read the type of chemo that dad is taking and as well as alimta there is carboplatin. I was surprised because Stacey mentioned cisplatin.
Reading about these on the various websites it seems to me that carboplatin is better because it has the same benefits with less side effects.
My dad is in Hull and they just gave him the alimta, we didn't have to ask. If I were you I would push for it because from all I've read it is the best, but even then it only prolongs life by about 4 months. Even so, from what Antoinette has said there are some who live for several years.
The zeolite is an alternative therapy that has some good circumstantial evidence, but I am far from convinced at this stage. Even so dad really believes in it and it gives him hope when otherwise he wouldn't have any. This is more important, I think, because he does have any belief in God.
He had the chemo a week ago last Monday i.e. 12 days ago. On the thursday he said it was the worst day of his life. But 2 days later he was improving rapidly, and yesterday he was mowing the lawn and feeling fine. I don't know what stage he is at, but I know that his lungs were filling up in late January.
The alimta is administered every 21 days for 6 sessions. After 2 of them he will have another scan to see if it is beneficial or not. Is your dad on a similar program?
On a different note, what I am finding is that this terrible experience is bringing us closer together than ever before. I think about him so much and just wish I could be with him more. As it is I only get to see him every 2 weeks or so. This Thursday he and mum are visiting us, in Cambridge, until Monday, so it's good that he's still got the strength for a 2.5 hour journey.