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any mesothelioma patients...


utahLisa

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...out there?? Just wondering if there are any of you dealing with a mesothelioma diagnosis?? My mom just finished her last treatment of Alimta and we are wondering what the next step is and what to expect?? Any info is so much appreciated.

Thank you, Lisa

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Lisa,

I'm not a patient, nor a family member, but I just wanted to let you know that I've written a couple of rather general and introductory posts on mesotheloma management over the past week (more to follow -- it's just a start). They're listed here if you're interested:

http://onctalk.com/category/mesothelioma/

Unless surgery is an option, which is an unusual situation, we usually stop chemo and watch for a while, considering additional chemo at a time in the future when the mesothelioma progresses, which is sometimes quickly, but other times not for a long time. I have a patient who I treated initially and had a very good response, then we stopped treatment, and she went about 11 months before re-starting chemo. The problem is that there isn't any chemo with much of a track record as second line treatment or later, but in this particular case, we went back to her original regimen because she did so well for so long, and she responded again after two more cycles a year after her first treatment.

-Dr. West

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Dr. West,

Thank you so very much for taking the time to respond. I appreciate the hopefulness of your success story. It is needed right now since my mom is suffering the terrible side-effects of her final treatment. She did amazingly well through it all and just this last treatment has got her extremely fatigued. We are hoping for the same success as your patient. Thank you, again, for sharing your knowledge and experience. You are doing an incredible job here and giving so many the help they need to cope with cancer.

Many sincere thanks, Lisa

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  • 1 month later...

Hey, Lisa and Dr. West. My dad is 82 and was dianosed with pleural mesothelioma last month. I am so scared for him. I don't know what to expect.

He had a pleuradesis 3 weeks ago due to the large volume of pleural effusion that he had experienced. They also wanted to do biopsies. He will start Gemzar in a couple of weeks unless it makes him sick. He is still trying to recover from the surgery and he only weighs 127 pounds. I believe that he is wanting to concentrate on quality of life more than anything right now.

Lisa, I hope your mom is feeling better by now.

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I'd have to admit that I've never treated a patient in their 80s with mesothelioma, and we'd definitely want to be careful not to have potentially challenging chemo cause more problems than it treats. As you may know from other sources, and it's also included on my website, OncTalk (here's the post: http://onctalk.com/2007/06/26/chemo-for-mpm/), "standard" chemo is cisplatin and alimta, which would very likely be quite toxic in most 82 year olds. However, there's also evidence that carboplatin with alimta does equally well and is usually considerably easier for patients. If a two drug combination is felt to be more challenging than would be worth pursuing, single agent alimta is also an option. I would also say that gemcitabine is a fine drug, but that it's largely been pushed aside as a first choice for mesothelioma after alimta was approved for mesothelioma.

All of that said, I definitely think it's important to prioritize quality of life, so light or even minimal to no chemo could be appropriate if he wants to ensure his comfort more than anti-cancer treatment.

I hope that helps.

-Dr. West

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Dear Dr. West,

I can't tell you how happy I was to recieve your response. I do appreciate it SO very much. We feel very alone with all of this.

I will tell you the details of my dad's illness and medical history and I would like an honest opinion from you as if he were your dad.

Dad has a mitral valve leak, diffuse small vessel disease, only 20% kidney function, and now, the mesothelioma at almost 83.

He has been very active and has seemed to be much younger than his age... dancing on weekends, going to the casino, etc.

The mesothelioma covers a good portion of his pleura, I think has started to grow somewhat into his chest wall and possibly is on his pericardium. Right now, he's pretty much asymptomatic. His right lung is picture perfect at this time and as far as we know, the cancer has not spread anywhere else. There was evidence of a pleural effusion in April of 06, so the oncologist told me that he probably started with this around May 06.

I haven't been able to talk to the doctor in private, but have been wanting to ask her about how long she thought maybe Dad has. I don't want Dad to lose hope and depress him with gloom news, but my siblings and I would kind of like to have an idea.

The onlcologist plans on using only Gemzar on Dad and says that the side effects are very minimal and that she could possibly prolong his life a year (which I thought was VERY optimistic and maybe even realistic) but she knows more than me for sure.

She said that if he feels badly after the first or second treatment, he would stop it. I wonder if damage will already be done, though. ??????

ANY input at all regarding my information and questions would be so very much appreciated. We are so afraid and I wake up every morning so depressed and worried knowing that I am slowly losing my dad and I don't know how to help him and don't know what to expect. I worry about the pain that he will maybe be in and if they will be able to control it and I worry about him not being able to breath, etc. The doctor said that some people actually feel better on chemo. ????

Thank you so very much for your input on this. I respect so much what you are doing to help others.

I will be waiting for your response.

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  • 2 weeks later...

Hi, I am so very sorry to hear about your dad's diagnosis. His story sounds very similar to my mom's. My mom completed her treatments with Alimta/Cisplatin. Her tumor is confined to the right chest cavity. It did not shrink any but the chemo kept it from metastisizing. She will begin another round of Alimta week after next. She was in perfect health prior to this diagnosis. She had a thoracotomy and pleurodesis in April. She did fairly well with chemo but she is extremely fatigued. I just happened to check this site, which I haven't done in quite a while since there aren't many mesothelioma patients. I will include another site that is so helpful. There are a few women that I correspond with who have a parent suffering this same disease. It's so helpful to share your story and find out as much info as possible. Here it is:

http://www.mesothelioma-care-community. ... oard=share

Please e-mail me with any more detailed questions:

utahungers@yahoo.com

Keeping you and your family in my prayers. Continue to have hope and believe in miracles...they do happen and we've heard many stories of them!! Take care, Lisa

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Thank you for replying, Lisa. I am also sorry about your mom. It's so sad.

I really hate to be so pessimistic, but I also want to be realistic. Please tell me if I am not right about what I am thinking about all of this.

In the case of Mesothelioma, I know that they say it is incurable. Chemo can slow it down, maybe shrink tumors and keep the cancer from metastisizing. My question is, (as pessimistic as it is, I'm sorry)....

Won't these things eventually happen anyway? Won't the cancer take over eventually while so many people take the chemo and are sick for a good part of the week in which they are receiving treatments and possibly risk getting infections etc.?

I want my elderly dad to be able to make the right decision and I certainly want to keep him here, but I don't want to push him into something that may very likely make him worse. I may post this also in a new post so more people will see it.

Any comments are welcome. Thank you.

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Hi, I know exactly how you feel and understand all the thoughts that are going through your family's minds. Even though this cancer is incurable, the chemo can prevent it from spreading so quickly and give your dad many more months/years of quality life. My mom did not suffer much with her treatments. She was fatigued and had some problems with anxiety but other than that, she really did okay. She did the best in the beginning and it wasn't until the end of treatment that she was so weak that she wasn't able to do anything but rest in bed. I guess it just depends on whether your dad just wants it to take its course and use palliative care with pain meds, etc. We heard that it would be more painful to not take the chemo. There are many stories of patients who have come a long, long way while doing chemo. They were given six months and it's been almost two years for some. If your dad is healthy, I'd say extend his life and do all you can to keep him with you. I know the surgery would be hard on him but he would do well with the chemo, I'm certain of it. I'm thinking of you and will check in to answer any questions...sorry if I'm not much help. I'll send up prayers to cover myself :) Lisa

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  • 1 month later...

Hi All

We live in South Africa, and let me tell you this is a very lonely disease over here. Oncologists have heard about it, but cerainly no one wants to help with treatment. My husband is 52 years old and has mesothelioma. Been the surgery route, done the chemo, done the radiation, done the tomotherapy (in the UK), and now is trying Tarceva. I have "fired" the negative oncologists, and probably know more about my husband's condition and treatment than most doctors - I have done nothing but read, read, read. Not one single doctor has even so much as recommended multivitamins or supplements, I have had to figure it all out myself, being very careful about what can and can't be taken in conjunction with Tarceva. Even having to check up on doctors that they are not prescribing an antibiotic that is unsuitable for diabetics, when they know full well he is diabetic. Does no one care ??

Anyway, my husband started on 150mg for 25 days, after day 8 the acne started. WOW can this be bad. His high temperatures stopped, his sugar levels stabilized (he is diabetic), and the awful cough disappeared. However, his iron levels very low, has loss of apptite, and very tired. No other side effects. I was told by the specialist treating my husband for his diabetes that the sugar, temp and cough were all a result of the tumour.

After day 25 we were not sure if we were able to get authorisation for purchasing in SA, so he went on 150 mg every 2nd day, but luckily it was approved and he went back to full dosage after 4 days. But, day 40 and his acne was so severe, that I insited his dose be reduced. The doctor is of the opinion that the drug is not working anyway, without any scans, but I am not convinced. Since going on 75 mg,(4 days) his cough has returned, he has high temperatures every day, his sugar is spking. BUT the acne has almost cleared completely. Our doctor told us to take 1 x 150 mg every sendond day (being the reduced dosage to 75 mg) .. strange as you just get the tablet cut in half ? There are unforunately no 75mg tablets in the country and would need to be courierd.

My logic ....... I have changed NOTHING other than reducing the Tarceva dosage, therefore the drug must've been doing something ???

The pharmaceutical company will not speak to me because I am not a medical practitioner - I could not even get any further information from them in case there was something that I had overlooked in my research on the internet !

Everything I have read has stated "the worse the rash, the better the drug is working", now I know they are talking about nsclc ... but surely it would be the same for mesothelioma ? Or am I just being way too positive ?

Any comments would be GREATLY appreciated. I am tired of this very lonely battle trying to prolong my husband's life. PET scan scheduled for this week, but unfortunately there is a 2 week window period between the previous scan and starting on Tarceva, so I am not sure if we are going to get a true reflection. BUT PRAYING the doctor is wrong !

Regards

FRL

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FRL welcome to this site So sorry you have to be here though. we in this country have not really had to fight to access this drug like you are having to go through. HOWEVER, one of our members at this site has won a personal battle just days ago in ENGLAND for her husband and is leading a crusade of sorts over in UK. THis is a link to her website. Click on link to be redirected to her site.

http://www.lc-action4life.co.uk/

I AM NOT SAYING GOOD BYE HERE OK!!?!?!?! we can still help in so many other aspects of fighting this battle. This site is full of compassion and knowledge and support in dealing with this disease. Together with all of us we can hopefully make this a little easier to deal with.

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My dad had a doctor appointment with his oncologist on Thursday. According to his X-ray report that he did that morning, the entire lung is better than it was last month... even the cancer. She told him whatever he was doing, to keep doing it.

His lab work was also better. He had been anemic last month. He has received no treatment whatsoever.

The only meds that he takes is for his heart, sleep meds, and pain meds for his back.

I hope this isn't just the calm before the storm, but for right now, we are elated.

I believe that he has made the right choice for not having treatment. He feared taking treatment and feeling bad much of the time and also having to take time from his life from the doctor appointments etc.

Right now, he enjoys each day and feels fairly good for an almost 83 year old man.

I just wanted to post our update and pray that others may be blessed with the same.

I'll stay in touch and keep all of you informed. I'm still open to any input anyone else has on this disease.

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Hi Randy

Thanks for replying. Fighting a losing battle here until NICE (some organisation in the UK who list what is approved and what is not), ans SA seems to follow their lead. We have no problem paying for the drug ourselves if we have to (though somewhat expensive). I will even go to the UK an get a prescription from the oncologist and bring over personally, but don't think it will get to that.

I put my husband on 150mg last night. Tired today, but his cough has diminished and a lot drier. His temperature hasn't jumped today as yet, but the sugar is still playing around. That I can cope with. I am able to increase his anti-depressant by 15mg, which will help him emotionally(I think), but one of the side effects is it makes you tired.

I am going to ask the pharmacy if they are able to cut the tablet into 3 (making it 50mg per piece), if not, I will give 150mg and 75mg on alternate days until the PET scan and some indication if this drug has had any benefit.

Does anyone have any info on Avistan ?

I am so glad I found this site, as I said before, this disease is very lonely - as I am sure all cancers are, but usually when you mention you have lung cancer, there is someone out there who can relate as they have a friend or family member who has experienced. But, you mention mesothelioma and people look at you blankly.

Thank you so much, I really appreciate the contact.

FRL

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Hi LuBelle

That is fantastic news. I know what it is like to sit and wait for the results, and how you feel when they are encouraging. If you could bottle whatever it is your dad is doing and send it to me .... my husband alwasy claimed he was not a statistic and has had such a positive attitude, but I think he has lost that this time round. I don't know how to make him fight, he says he does not want to stop treatment and we will get through this, but I wonder if it is not all too much for him. He has put on weight, able to walk around a bit, but struggles to open a bottle of water.

Please send your father greetings from SA and I am so happy to hear positive stories.

Regards

FRL

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Hi All

Unfortunately Tarceva did not help my husband and we are discontinuing treatment. 2 months of that terrible acne - and just to be told it did nothing to help. But then, I suppose not everyone reacts the same to treatments.

Does anyone have any suggestions as to next step to look into ?

Regards

FRL

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1) first thought Here Try this Link and leave a note or check aroound for Dr West. He is our resident oncologist Certified. He would have the best thoughts and ideas about this. He is a Licensed Oncologist at Swedish Institute in Washington state and specializes in Lung cancer. THAT IS #1 idea.

2) click onlinks to be redirected to the sites below;

A) http://www.cancerhelp.org.uk/help/default.asp?page=4391

B)http://www.mayoclinic.org/mesothelioma/

C) http://www.cancer.gov/cancertopics/pdq/ ... a/patient/

D)http://www.medscape.com/viewarticle/456926

THE NEXT GROUP IS A LITTLE MORE SPECIFIC ABOUT CHEMO

E)http://www.docguide.com/news/content.nsf/news/852571020057CCF6852573600043D8C0

F)http://www.forbes.com/markets/feeds/afx/2007/09/20/afx4138972.html

G) http://www.medicalnewstoday.com/articles/9238.php

LET me know if this helps. HTere is some reading in the top section but you will learn a lot about the disease and how it is treated and diagnosed and options. Second section is most common treatments you could ask about. VERY COMMON ESPECIALLY ALIMTA BY ELI LILLY.

Let me know if I can do anything either in the posts or by Private mail. I am a bloodhound here.... :):):shock:8)

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Hi Thank you for writing - nothing I have read is available in SA, apart from those approved like Alimta and Cisplatin. We even had to struggle to get Tarceva. But if you a bloodhound, I'm a bullterrier and don't give up. Chat on personal mail - if I can find it.

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