When DH and I went to Cancer Care yesterday they discussed the fact that they wondered if DH would be willing to take part in "Randomized Phase III Study of Thalidomide and Prednisone verus "No further" therapy as maintenance, following "Autologous stem cell transplant in patients with Multiple Myeloma, which you all know DH had. DH would just continue getting blood tests every once in awhile and Aredia treatment once a month for his bones and that would be it unless he got sick again and required further treatment.
If he agrees to take part in this study, he will be assigned to get one of the following treatments;
Group 1 Prednisone30 mg and thalidomide 200 mg
If he is in this radomized group 1, he will receive 50 mg of prednisone every other day and 200 mg of thalidomide each day. Both these drugs are taken by mouth. The doses of both drugs may be lowered if he had side-effects.
It is planned that he will take these two drugs for up 4 years.
Group 2. No further therapy. If he is in this randomized group 2 he will not receive further anti myeloma therapy unless his myeloma comes back or grown worse.
Side effects of Prednisone are:
mood changes
difficulty sleeping
increased blood sugar
increased blood pressure
increased risk of infection
change in appetitie
Rare but possible......
stomach irritation
ulcers
depression
Longe term use.....
"moon" face
osteoporosis (think bones) bone fractures
bone pain
loss of muscle
cataracts, eye nerve damage
THALIDOMIDE:
dry skin or rash
constipation
fatigue
drowsiness
dissiness
nerve damage....tingling, pain or weakness to toes and fingers, potentially permanent.
sudden problem breathing, and risk of blood clots.
Benefits to taking part in the study
If he agrees to take part in this study, there may or may not be direct benefit to him. They hope that information learned from this study will help other patients with Multiple Myeloma in the further.
They advised us to, to read the information they gave us, (they did not try to sway us one way or the other). Talk it over with friends and family and listen to what they have to say. Both Prednisone and Thalidomide have been used along with chemo drugs for a couple of years now. DH did have a form of Prednisone that if you remember made him so sick he could hardly swallow and burned all the way down his to stomach I think. That eventually did go away. He never did have the Thalidomide. If he is going to do this, it looks like they will start running tests on him as soon as early November.
Having said all that, they did say that taking part in the program could extend his period of remission and he could live longer, but there isn't any proof of that as yet.
Our grandson, says, "absolutely not Papa, you just started to feel good and I want you to stay like that." That is from the mouth of a 12 year old. We have not had a chance to sit down with son and dil yet. I would like to ask you all what do you think you would do......what would you advise me to say to DH, what would you say to your DH (please God no) if you were in my situation. I need all the help and opinions I can get. Thanks all.
Firstly what an interesting observation by a 12 year old!
What would I do..........
I have read and re read your post a number of times and perhaps I am totally selfish but I would NOT take part in the study.
There are no guarantees that taking part in this study will give him benefits other than some serious negatives, like depression in particular.
You have both been through such a lot this last year, I would like some normality in my life.
What is the prognosis of remission by not taking part in the study?
The positive by taking part would be that he will VERY closely monitored.
I don't envy you being faced with this decision, ultimately it is of course up to your dh but he has to consider you and what effect it will have on your life.
It will be interesting to hear everyones comments and in particular your son's and his wife. Perhaps the younger ones have a different perspective on things.
I know for myself that it took me a long time to being able to chat about my breast cancer, if I would have been offered to participate in some sort of study, I doubt if I would have done it, I just wanted to get on with life as quickly as possible.
It will be interesting what Glenda's response is and how she would have approached the thought of being part of a study.
I guess I am not being very helpful but the more I write (and believe me quite a bit has been deleted and re-typed ) the more confused I am.
I would be doing exactly what you are doing, find out as much as I can from perhaps other patients that have been part of a similar study and ask family and friends their opinions.
There is some interesting information of the net, this is just one of the site I had a brief look at...http://www.cancer.gov/clinicaltrials...t-trials/page3
Good luck with your decision making, I am with your grandson!
Cheers
Maria
PS I just spoke to my daughter and told her about your dilemma, she said it was a very personal decision but if she was asked for her opinion she would NOT take part of this trial. She said that she would try and stay away from hospitals as much as she could and enjoy life!
She also said that the majority of the nurses she met on the cancer wards would all say NO to chemo but of course that also depended on the type of cancer. In your dh's case chemo was essential before he could have the transplant.
I agree with your grandson also. He has been thru so much this year already.
It is a personel decision and a very hard one to make.
Also if he had problems with that one drug before, he will probably have problems again. Thats what worries me.
Sally, I agree with Maria and Lily. It is a very difficult decision but with DH's history of the reaction to one of the meds it would influence me. Also as you grandson said...'you've just started to feel good, Papa, and we want you to stay that way'. So do we all want him to continue to feel good...not only good but gooder and gooder. Gloria
Just stopping by to tell Slavika I am in line with Lily, Gloria, And Maria, You all have been through so much this year why take on more. JMHO
Also wanted to let you a know that things are going along. We were told my day may live a few weeks or longer. He has accepted that he will pass and is in very good spirts. My Brothers brought over a recliner to my sons yesterday for the big party. He was sitting so he could see all the action and take part. We has maybe 50 people here. The house could have been a bit bigger but the weather was pretty nice so people wandered in and out all day. I think we finally got the place cleaned up around 9:00 in the evening and every one was gone by then. It was a good day for all of us. Even with so many people everyone found tine to sit on the floor beside Dad and have a few word between them. It was a good day and Dad was happy. After church today I went over to clean Moms house with Dad beigng sick not much was getting done and I know it was brothering here that it was a mess and the Hospis people will be in tomorrow to talk with them. My SIL and Neice were helping me in the house and My brothers were out side winterizing the house. Dad was issuing orders from his bed. Still the straw boss. He is insisting he is going to the resturant in the morning to have coffe with his friends. So my DH is going to go with him. I would but I really don't want to talk with a bunch of men! My mom wants to go to her exercise class. Trying to keep thing as normal as possible .
Just so all of you know Sprout was a good boy while we were traveling. He had to stay in his carrier the whole time we were waitng for our flight and in the air. Once we were on the ground in Minneapolis I let him out. He cryed a little on the plane. But as soon as I opened the zipper a little so he could see me he settled right down.(He had to stay on the floor under the seat in front of me). I think maybe it was harder on me than him.
Well have to run. So I'll be stopping by as often as I can for the next month.
Slavika: I keep re-reading your post. The side effects really bother me. I know It doesnt happen to all. But I just keep thinking. He is doing good now. He is coming back to himself. He just doesnt need this added to what he has already been tho. He needs time to enjoy life right now. Maui for one. Your dream place.
Enjoy what you planned for this year. Then maybe rethink it later. Tho I would still vote No
Very hard.
Karen: Im so glad the Party was a success! Im sure your dad love it. Im so glad it made him Happy.
I think it best to keep it Normal.
Poor Sprout. It was hard on him. But he made it! I can just see his face... Mommmmmmmmmm Let me out! Mommmmmmmm! Puppys just love them. He will have a hard time going back to. But he will recover
Thank you to you gals who had the opportunity to help me out with the "Clinical trial question". I know I will likely hear from the others when they have a chance to read my post.
Our good friends came into town on Sunday early afternoon (the ones we spend all the time with at lake and in Maui) to talk to us, and they both felt that DH should NOT do this. My friends husband actually knows a doctor very well at Cancer Care he told him that if DH did take part in the study he would definitely get 75 percent of the side effects from the drugs. Our friend also told us that his business partner was on Prednisone for 18 months and almost lost all his eye sight, and felt terrible the whole time he was on the drug. He did a very foolish thing, he just quit cold turkey and came off the drug because he was feeling so crappy and his doctor was not pleased that he did it like that.
When our friends left our place, our son came over and read the "participant information" sheets the hospital gave us and said, that there was NO BENEFIT to his Dad to take part in this study and told us to just to forget it. He said we have had a long and exhausting year and to quit thinking about it, enjoy our lives, and if the time comes when his Dad does need treatment.........deal with it then. We knew that this study was mostly for people who might get Multiple Myeloma in furture and that it probably would not do any good at all for DH and in fact because of the side effects of the drugs he could get very sick. One of the worse side effects was that it could possibly effect his eye sight....and that scared the **** out of DH because he would not be able to drive anymore and the other is the blood clots....that's very serious too, especially if we want to fly.
In the evening my brother and his wife invited us over and took us out for dinner and they both just said NO. My SIL is a home care worker and has patients on prednisone and patients who have blood clots and said just don't do it.
I did what I said I would do. I told DH I would support any decision he made but did voice my concern about the side effects of drugs, but it was up to him. He said it was good to talk to friends and family and get feed back and read the emails he received. He had felt that because at one time some people had taken part in clinical studies to test the drugs that HE was given, and then went into remission, maybe he should "pay back" by doing the same thing, by taking part in THIS study. I think he felt a sense of duty.
They would want to get started right away on the study, even before he his 100 days are up, and I know he's concerned that he might end up too sick again and not be able to travel to Maui, or be to sick and tired while there to do much, so he has decided he will NOT take part in this study. I can't even begin to tell you all how relieved I am, and how relieved our son and his family are. We will let them know at the hospital tomorrow about our decision. Thanks again everybody, you gals are really wonderful. Karen I am happy that your Dad had the opportunity to enjoy his friends and family. I'm also pleased that "Our" little Sprout proved to be a good flyer. How sweet is that. I laughed at Lily when she "spoke" for Sprout. hee hee
I forgot to mention that I lost .8# at WW last Tuesday. It sure is slow going.....but it was a loss. Maria that is the thing with this study, they don't know whether it would do any good in keeping DH in remission or not. Because he will not take part in the study.....means that he will still get blood tests on a regular basis, also he will have a bone marrow biopsy after day 100, and every year after that with all the other tests repeated yearly...CT scan, lung function tests, Muga Scan for the heart etc. He will also be given the drug Aredia once a month to keep his bones as strong as possible. Gloria thank you for your input too. I want him to feel gooder and gooder too.
Slavika, I am so happy you made this decision. When we talked earlier, I thought it was mentioned that there would be some kind of benefit, but I didn't see any pros at all to being on the clinical study and the side effects were dismal, all dismal. I am so happy you made this decision. I agree with your family. And re: the sense of duty your DH felt regarding the drugs, just this once, decide to be part of the "control" group that gets none of the drugs. The tamoxifen that so many women take after breast cancer does not have those kinds of side effects and has been proven to delay a recurrence. I am so glad you have made that decision and you have that heavy load off your shoulders. You just think about Maui and the fun and sun and family. Hallelujah! And what joy!
I am very happy, I 'watered down' the comments my dd had made to me, she was VERY strongly against taking part in any study, she will also be happy to hear this news.
I understand what your dh means about the 'sense of duty' thing, I think it is something from our era
Slavika Not one single person thinks the clinical trial is a good idea. It is time for the both of you to get on with your lives and enjoy. Your DH looked so good on Thursday when we ran into you. Karen I hope your Dad's last days are happy and peaceful. How bittersweet the party must have been. I know how Sprout felt, I hate flying too, I tend to whimper a bit during the flight.
Grrrr .... computer problems. I sent out a couple of really cute Halloween e-mails and Slavika informed that they aren't working. I don't know what is up with my PC these days. The picture I sent of my was HUGE, but if you click on the attachment it is smaller. For some reason ???? I can't do things as I used to, I have to adapt..... I hate adapting!
Gloria YIKES... snow! So far the weather has been great and no snow in sight, but that can change any time now. For us, once it gets cold and snows that will be it until spring.
Our Halloween is over..the little munchkins were so cute. The costumes were so nice. People go to a lot of expense these days. We live across the street from a elementary school. We took our over to the school yard at recess to see the kiddies playing, they were all in different costumes.
Now I guess, the next big holiday is the US Thanksgiving (ours is over) and then Christmas.
Slavika: Im so happy you both made this decison! I know Dh wanted it. But Im also very happy he didnt take it. It had to be very hard on him. Very hard decision he made.
Along with the rest of the world I began to to breath again when I read that Slavika's DH gave the test thig a thumbs down.
Things are going along around here. I'm taking my Mom shoping today so when the day comes she will have a nice dress to wear. My Dh is staying with Dad.
My son who we are staying with has 2 cats. Guess what Sprout has been doing. Chasing Cats and they are both bigger than he. wonder when they will have had enough?
Just came back from the Commissary and boy am I pooped. Got all the last minute stuff for our trip, sm OJ's to take our pills with before we leave the hotel rooms and things like that. Have put it all away and now am sitting here to catch my breath.
Had a great Halloween...had about 60 trick or treaters in all. The last group were a bunch of middle school girls. The first one said to DH ( we were both at the door)...Are you Sean's grandfather, my locker has been next to his for 3 years. Next one...Oh, your Sean Paul's grandfather! And so on. Of course the acknowledgement of Mr. C and ignoring me had been going on all night. Everyone know's Mr. C the dog walker and I guess I am just chopped liver. Well I just had to call DD#2, Sean's mother, to let her know how popular her 14 yr old is. She said he is not dating yet but does have his following. The girl's all call him by both of his names...Sean Paul. His sister,12, has just started middle school and some of his 'girls' have made friends with here already. No dummies. I thought it was so cute as he is the oldest of the younger GK's and I told his mom that he should only give her everything she gave me.
WE ran out of candy just as it turned 8PM so it was lights out and Thank You nothing left for me!!!!!
Slavika: I will join in with everyone else and say I think David made the right decision and now it is on to a great time in Maui for you both
I guess Slavika if there was any doubt for your dh to participate, the vote here has been a resounding NO
I hope you are settling down and looking towards that day 100, that cannot be too far away.
Gloria that is so cute about your grandson, sounds like he is a VERY popular boy I bet grandpa was a bit proud as well!
KAren so Sprout is not missing home then with 2 cats chasing him . It must be nice for you to spend some time with your son as well eventhough the reason for this trip was not a planned one.
Trudy especially the last 5 years has been all about adapting!!! I am so sick of it and don't want to have to adapt again!
It was a hot day here yesterday, ds and d-i-l called to go to the beach. They left the car here and we all walked to the beach to give Matilda the first taste of the beach. Well she hated it!!!!! She did not like the sand on her feet or the water lapping her ankles. She was very grizzly so djh and I walked home again and left son and wife to have a swim. Matilda was very happy to be home in the airconditioning and just watching me getting some stuff ready for an impromptu dinner. DS is a bit disappointed, he thought she would love it but alas Matilda has a mind of her own!!!!!
My new camera is arriving in the country today and hopefully I will get it couriered to Adelaide before we go away for the weekend.
Karen, I hope you are enjoying each and every day. This is a tough time, but you are getting a lovely chance to say everything you ever wanted to. What would Sprout do if he caught the cats?
Trudy, I had no trouble with the Haunted House and I loved the angel's picture. I hate adapting too, but change is just inevitable. The older I get the deeper the ruts from my heels as I am dragged along.
Slavika, I was very glad to read Trudy's comment that your DH looked so good when you all ran into each other. That is just such a miracle and such a blessing! Maui here you come.
Maria, I laughed about Matilda having a mind of her own. Who do you think she might take after?
Gloria, the things we need as we get older sure do change. I also laughed when I read about you needing small OJ's so you can take your pills in the morning. When we were 30 did we even think about such things? And those little girls who are your GS's fanclub! Isn't that funny to see and to know that your DD has so many fun things in her future with TEENAGERS! I always want the grandkids to be wonderful, but hope they let their parents see just a little of what they put us through.
Lily, Peggy, hope this finds you well. Peggy, I never would have thought you were the grumpy type.
Glenda
Feisty & Sexy 50-60 year olds #66
) the more confused I am.
Gloria
Hi..
was HUGE, but if you click on the attachment it is smaller. For some reason ???? I can't do things as I used to, I have to adapt..... I hate adapting!
