3 Month Update

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barbara

Pioneer Founding member
Small world

Wow - What a great post and a double header at that! I e-mailed the president of the PowerLung company today and we will decide what we are doing by early next week. We will probably go ahead and buy an inventory and that will enable us to give our forum members a discount on the product. I swear by the device personally and not just for lung patients. So if you can be patient a few more days, we should come to a decision. You have really been through the mill. It is amazing that you found Tony somehow who is an ultimate Pioneer in my opinion and that led you to this forum. Are you considering stem cell therapy? Obviously, you have an interest in it, but some are sort of waiting to see what the future brings and others feel like there is no time like the present. Either way, the forum welcomes you and your participation. I have never heard of a heart virus either. Maybe, some of our cardiac patients will respond. I wonder if it is common. It sounds horribly scary.
 
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Mysty119

New member
Yes.....and yes.

Yes, I can wait to see what you decide as far as getting the power lung. And yes, I am very much considering getting the stem cell therapy. Just waiting to get some things together before I fill out the application and speak with the doctor.
And yeah, I've been thru enough, but one thing I learned from the heart virus set back was to keep busy. Because I didn't know about some of the different things that pulmonary therapy teaches you, I was just home most of the time and not going anywhere. I didn't need the O2 for just going to the store, etc.; but quickly learned what "fear" was when I went out on a very humid day. I thought I'd "bought the farm". I continue my exercise and what's nice is: In February '07, an old junior high school mate got in touch with me on Classmates.com. We emailed for a while and then we met up. Apparently, in Sept '06 he suffered major clinical depression. He was being put on all kinds of anti-depressants and had counseling and none of it was doing him any good. He was living alone. After we "caught up" on each other's lives, he was in better spirits---enough to "keep at it with his treatment". He is a vet and began getting benefits thru them. He was getting treatment for his Hepatitis C and prostate enlargement and cirrohsis of the liver. He is also a diabetic. At least now he was caring about getting better. He had lost his car to repossession as he was not getting any pay. I began taking him shopping and to all his appointments, do crosswords with him and play cards and brought him our leftovers from dinner, which he truly appreciated. We also went on "adventures",----taking drives to different places. Saw a lot of waterfalls and parks and gorgeous scenery! Kept me busy, and him happier. In October we found he has liver cancer. Inoperable. He has maybe 6 months. So, you see----I don't have such a bad time of it. But when he's up to it, we still go on our adventures.
And yes, heart virus is rare. But here is a site: pslgroup.com/dg/ec706.htm It tells about it.
 
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barbara

Pioneer Founding member
Never give up

I am not sure if liver cancer is being treated with stem cell therapy, but many cancers are. It would be a good question to ask the doctors. You may get some negativity from your own doctors. Some are that way, others aren't, but he scale is beginning to tip in favor of at least having an open mind.
 
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barbara

Pioneer Founding member
Looking for angels

There are groups that might possibly be able to help him. If you can, search the internet looking for angels that do help people that are in this position. I would also have him contact stem cell companies and ask if they have any compassion programs or terms that he could possibly meet. This is too sad. Jeannine and I are working on our own little fund and some day in the future our dream is to not have to read sad stories like this without being able to do something about it. It is fortunate he found you and that your friendship was renewed.
 
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hlichten

Super Moderator
I found one possible clinical trial

Here is a possible clinical trial for you to check on for him:

http://www.clinicaltrials.gov/ct2/show/NCT00003839?term=Liver+AND+stem+cell&rank=3

It is in Bethesda, Maryland and they list a 1-800 number for patient recruitment.

I am quite sure it would be free.

There may likely be others. I will keep checking.

Also, since they got rid of my cancer years ago, and because they are so incredibly wonderful there, have you considered taking him for a week to the MD Anderson Cancer Center in Houston, Texas? You spend 5 days there, and are given any options that they can suggest. They may be doing stem cell trials there, no way to know really without asking. They won't charge him a dime if he doesn't have money, it is totally on an ability to pay basis. I feel that anyone with a malignancy that doesn't go for an opinion at MD Anderson is selling themselves short, even if they have been to the Mayo Clinic. People come from all over the world there every day.
 
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barbara

Pioneer Founding member
A fantastic suggestion

Harvey - This is a wonderful idea. We do live in a generous country and if he has no money and they will treat him at no charge, I would hope he would go. Mysty119 - If transportation is a problem, please let this forum know. You never know who has some extra frequent flier miles they could donate or in some other way help this person.
 
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Mysty119

New member
Barb and Harv

I thank you both sooooo much for your input. I went to pick Pete up this morning for his two a.m. appointments and to have his abdomen tapped this afternoon as he has so much fluid in there. He had it tapped somewhat, not fully in the beginning of Dec. and felt a little better. He weighed 202 after that tap. Now---5 weeks later he weighed in at 227!!! And believe me, this is not from over eating. He gets so hungry but is so uncomfortable that most times he doesn't eat much. And THAT---is not Pete!! He was a good eater and ate good foods for himself. I told him to do small meals whenever he was hungry. He also has the fear of more pain if he does eat. He's on pain medication and anti depressants that make him sleep way to much. He's losing his muscles. It's bad enough that he's a diabetic and has little feeling in his feet and therefore oftentimes, he doesn't have good balance. And just few months ago he was so---alive!!!
No---he wouldn't be able to afford travel. He's a hardship case at the Veteran's administration. They got him new hearing aids and glasses and are supplying home needs to him.
And Harv---yes, he too, lives in NY State. At first VA was directing him to the VA in Pittsburg for a transplant. But a week later, Pittsburg told Syracuse VA that they had the "abilities" to treat him and to do that. (This meant that he, like others, would be put on the list. And evidently, he didn't have the time to wait.) Well---time for me to " surf the net " and see what I can find. Again---thank you both!!!
 
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barbara

Pioneer Founding member
Contact MD Anderson like Harv suggested. If travel is the only problem, then that to me is a minor one. Keep us posted. We all care on this forum.
 
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rosech44

New member
Misty119

I Just Wanted To Thank You For Your, Very Informative Posts, And To Wish You And Your Friend Pete, Success In Finding Treatment For Him---and For You Also---I Will Keep You Both In My Prayers
 
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barbara

Pioneer Founding member
Angel lady

I just talked to my Angel lady and she says travel is never a problem. Groups like Make a Wish are available for just such things. The stem cell procedure in Dusseldorf sounds very promising. It sounds like your friend does have late stage cancer of the liver and that is sometimes where stem cells work the best. My stem cell doctor told the forum that he will treat lung cancer patients but it is better after they have tried conventional methods and those methods have failed. I am not sure why this is, being a non scientific person, but that is the answer we were given.
 
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hlichten

Super Moderator
The Dusseldorf procedure is a trial, as far as I can tell. Since it is in Germany, the requirements for a placebo group may or may not be there. I just don't know, and don't speak any German, so I can't call the University. I already tried previously for me. There is no problem finding people who speak perfect English in Germany, but if you dial the phone and nobody is there that happens to speak good English, it can be impossible to communicate. I had no real problems while we were in Germany for 12 days, but everywhere we went we asked right away if English was spoken. The Germans who speak English are really happy to be able to use it. We were at a Hyatt where everyone at the front desk spoke good English.

The link to the study I posted is the best and closest match to his condition, as far as I can tell. I have read through every stem cell-related study which could possibly include liver cancer, and this is the best one now.

As for his transplant option being eliminated, could this be due to the prognosis for his condition? Has the cancer spread to anywhere other than his liver, or to lymph nodes? That would be a logical reason for doctors not wanting to discuss transplant further.

Again, if he was a friend of mine I would get him to MD Anderson. Call the 800 number, make the appointment, and go. He will spend 5 days or more in Houston for a full workup. After 5 days, he will know everything, and any and all options he has. I went there after being told that I had less than 2 years to live. That was 14 years ago!! It is an incredible facility, and again, other than travel and hotel, there will be no cost if he can not pay.
 
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Mysty119

New member
Barb and Harv

I will keep what you said in mind, Barb. And Harv, I will approach Pete on the subject this weekend. Tomorrow he is slated to have the abdomen drained. He couldn't go today because he was so sick. I think it's the morphine pills they gave him to take to level off the relief of the pain he has. The oxycotin wasn't lasting long enough between times he was told to take it, so they gave him the morphine for the pain and the oxycotin he'll take if it gets real bad. He hardly ate anything today because he felt so sick. They told him yesterday he had about 6 months.
It's hard because he is so hard of hearing. Before I started going to his appointments with him, I'm POSITIVE he was hearing all that each of his doctors would tell him. You see, when you talk to him, even tho he uses hearing aides, you have to face him so he can read your lips. I constantly have to remind the doctors and the nurses to please speak up (especially if they have a higher pitched voice), and to face him when they speak.
But I will sit him down and talk to him about all of this. I know it's difficult for him because with me and my problems, he doesn't want to 'put me out'. I normally don't need O2 when I'm out and about, but I do know I might have a problem on a plane; and I need to have a concentrator when I sleep. My husband wouldn't be able to go with us because we need the $$$ from his job in order to take care of things here. But, I will continue reading all the stuff you guys have suggested and get back to reading about Dr. Anderson. I read so much online today that my eyes were blurring!!! But again guys, thank you for your help in this. Now I have to go to sleep cuz I have to get up at 6 tomorrow for his two appointments in the morning and the (hopefully), one in the afternoon to tap the abdomen. Honest to God---I tell him he looks 11 months pregnant from the front, and 15 months from each side!!!!!!!!!!!!!!! It's a good thing that I can make him laugh.
 
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hlichten

Super Moderator
Mysty119 said:
...I will continue reading all the stuff you guys have suggested and get back to reading about Dr. Anderson....
Click to expand...
There is NO Dr. Anderson.
It is MD Anderson Cancer Center, and it is part of the University of Texas system in downtown Houston. It is in the hospital district, surrounded by dozens of different hospitals and specialty hospitals.
Read at:
http://www.mdanderson.org/

From what you are describing, it is sounding less and less likely that he could make any kind of trip anywhere or tolerate any type of procedure.

I am, of course, very sorry.
 
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Mysty119

New member
oh my!!!

My fault----I know there was no DR Anderson......my sick sense of humor got the best of me. I had been reading and reading and reading. And---I keep forgetting that people can't "hear" voice inflection in my written correspondence. Silly me. ;)
Any way----I will still be looking into all of this and really do appreciate the input you've given me.
 
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hlichten

Super Moderator
Mysty119 said:
My fault----I know there was no DR Anderson......my sick sense of humor got the best of me. I had been reading and reading and reading. And---I keep forgetting that people can't "hear" voice inflection in my written correspondence. Silly me. ;)
Any way----I will still be looking into all of this and really do appreciate the input you've given me.
Click to expand...
No problem.
Let us know if anything changes.
 
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Regine

New member
update from Ward

HI: Regine here reporting for Ward. Apologies for the lateness. It's now been 3 months and 18 days. I keep remembering the doctor saying to him when we were in Mexico that it would take two months to a year so we are going with the flow. But boy has Ward had his ups and downs. Some days he can barely breathe and sometimes he's better. I was sick with a virus for several weeks and he caught it so back on prednisone. So far he's not been willing to try going without but thanx Jeanine for advice for mucinex and Afrin. Will try. Over all we think there is improvement in that he is not getting worse which it seemed like he was before stem cell treatment. Also his numbers with 2.5 liter of oxy are usually 98 & 99. He can go without oxygen if he is sitting and number stays around 92 but yesterday when he walked up to get the paper (a bit of a trip), without oxygen he went into low 80's. He takes shower with 2.5 liters with no problem and hasn't had trouble tying shoes like before cells. We are able to do things like go to movies and out to lunch and dinner. Thursday we're driving to Ashland Oregon for a 5 day seminar so just the fact that he can continue on like this is great. Right now he is out doing his volunteer work of cleaning the bottles that testers use to test the Yuba River (which is an integral part of our landscape), for cleanliness. By the way today is his 76th birthday. Thanx to all for keeping up to date.
 
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Jeannine

Pioneer Founding member
Regine

Thanks for the update on Ward's condition.

Happy Birthday Ward:D:D

Ward seems to be doing quite well considering he's been ill and it's only been a little over 3 months since he received treatment.

Isn't it nice to have an improved quality of life?

I still find myself improving. For example, on Saturday my husband and I went out to brunch, visited two hospitals (dual family crisis) and went out to dinner. I was out from 12 to 9 and probably used oxygen for no more than 20 minutes the entire day and most of that was to walk about 1000 feet from one end of the hospital to the other and I didn't even get short of breath.

Sunday found me out to brunch again, shopping at WalMart and Target without any SOB. I did use the O2 set to 1.5 while shopping and my Sats stayed at 95.
 
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