CancerCompass message board discussion started by Pat w on 7/28/2005 http://www.cancercompass.com/message-board/message/all,2599,0.htm Sun, 23 Nov 2008 00:00:00 GMT Sun, 23 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Thank you so much for responding to my call for support! We have an appointment Aug. 4th and they are going to sit down with us at that time and discuss what the treatment options we have to choose from with multiple myeloma. What really upsets me is they wanted my husband to do the clinical trial but when I called our ins. company, they don't cover that!! If it's a clinical trial I would think it would be free!!! After all, he's going to be a "human test" for them and we have to pay!! So we have to go to the VA. I've heard and read so many bad reports about MM and that he'll be very lucky to survive 2 years of quality life. Is this likely? Pat of "Husband Newly Diagnosed" Pat w Thu, 28 Jul 2005 00:00:00 GMT Pat, Hello sorry to hear about your husband. My husband also has MM he is 59 and was diagnosed with MM a little over 2 years ago. It is a very terrible cancer because from what our oncologist told us in the being it is a very rare disease more so in caucaseans. My husband went through 4 months of chemo almost 400 hrs. and then he had a stem cell transplant where they used his stem cells they thought that was the best way to go. And this treatment was the worst. Some people don't survive the transplant. As of last Sept. he went into remission almost one year to the day of his stem cell transplant. Without the transplant about 3 years is what was given as his survival rate. He goes back to his stem cell doctor this coming Sept. for his next protein spike to check the cancer level. He was lucky in that there were no tumors to have to be removed but he still is in a great amount of pain. His started in his lower back or spine. The MRI that they did in the beginning showed a great amount of damage from the cancer. Even though he is in remission his stem cell doctor told him not to get too excited that that could change at any time because there is no cure. He also takes thallimide and that is the only thing that is keeping him alive physically. He prays alot. I understand your situation about the clinic trial. We were very fortunate to have very good insurance because without it the transplant was $300,000. The thing is once the word cancer is spoken your life changes forever. Even though he is in remission I wonder daily and hourly what will come next. He also has to have a bone treatment once a month. It's a chemo called Aridia. It's an IV drip and depending on the stage of the cancer(My husband was in stage 3) tells how long you have to do the drip and his takes about an hour and a half but the thing with the Aridia it is now proven that long term use of this chemo cause what is know as Dead Jawbone disease which causes your jawbone to deteriorate. He has part of his bone coming through his gum and is really painful and the oral surgeon confirmed it. Some his oncologisst agreed to take him off of the Aridia for awhile. And they will also tell you hopefully that all the chemicals and medications that he will be taking can also bring on other forms of cancer and side affects like the jaw. He had to retire from his job because he could no longer keep doing it. He was a Dallas Police officer for 31 years. He had about 3 more years he would have like to finish but now all that we had wanted to do after retirement we've had to rethink. Good luck and hang in there. Shelia E. Garland, Texas She126 Sun, 31 Jul 2005 00:00:00 GMT Dear Shiela, Thank you so much for sharing your story with me. I have no idea what stage my husband is in but will find out this Thursday. I know he is in terrible pain in his shoulders and lower back and can mow the grass on his riding mower and that is the extent of what he can do. He has no energy at all. I'm really concerned because of his age (69) of just how much he is going to be able to handle. He is on medication for severe depression and has been for the last 5 years and his will is not that strong. Our pastor and some of the men from church have really been helping encouraging him and keeping him "busy" with helping them around the church with odd jobs which has helped him feel needed. We live 2 1/2 hrs from where he will be going to the VA. When they first start any treatments such as chemo. Do they usually hospitalize them when they start them on that kind of treatment or do you know that kind of thing or not? I don't have a clue! Pat w Mon, 01 Aug 2005 00:00:00 GMT Let me just say that it's so great that he has the support in the church. When my husband was diagnosed I think he must have been put on a dozen pray list and his friends came to see him faithfully. When he first became sick and diagnosed he was in the hospital for eight days and wasn't sure he would survive. He was so anemic and what blood he had left was so thick they had to give him something to thin his blood before they could give him blood transfusion and I think he had only about 5 pints of blood in his body. His MM started in his spine, he'd lost 40 pounds and his hair had turned white what was left of it but he couldn't see it. He just knew he had a lot of pain and didn't know why. After he was released for the next four months he went in for 4 days of chemo 96 hrs at a time in monthly intervals that was end of April 03. He had 400 hrs of chemo then the following Sept. 03 he had a stem cell transplant that nearly did him in and they let you know up front that this is the worst and that some patients don't survive this treatment. He was in the hospital for 3 wks with the transplant. But with out the transplant he had maybe 3 years with he has maybe 5. He now takes a monthly chemo called Aridia to strenghten his bone which has caused major problem with his jaws. This chemo causes whats called dead jawbone because it causes the jawbone to deteriorate. He also is on Thalimide or thalidomide which if you remember women in the 50 or 60's took for morning sickness which caused deformities in there babies. But this has been proven to help stop the growth of the cancer. But the thing is even his stem cell doctor is skeptical about his remission because it's such a bad cancer but also there are side effects from this drug which cause numbness in his hands and feet and pain in both. How your husbands treatments will go depends alot on the oncologist and the stage the MM is at. Even though my husband is in remission which came one year to the day after his transplant he is in constant pain. He had to retire from his job as a Dallas Police Detective of 31 yrs because he could no longer keep up with those pesky bank robbers! He is only 59. The thing with this cancer and I don't know what your doctor has told but his oncologist laid it all out the first day he was diagnosed that there is no cure. But there is now the thought and with the research they are doing they can now treat this like a chronic illness like diabetis. Well I hope I haven't totally depressed you with all this but it's like I said your husband oncologist will explain all of this to you but if your like me I still have questions and don't understand a lot but since I found this site I have talked with a few others who have loved ones going through the same thing. You're absolutlely terrified because it's so much to grasp. Please let me know how things go with your husband. Also it's very very important that you take care of you. Hope I have helped you in some way I had no one to go to about this so I was like you clueless but I have read alot on the net. Take care and your all in my thoughts and prayers. Shelia She126 Mon, 01 Aug 2005 00:00:00 GMT I've been thinking about you and your husband. I'm hoping that things went well with your visit earlier this month. I guess I'm just wondering what you all found out about his MM and what the prognosis is. You've been in my thoughts and prayers since we were in touch last. PLease let me know how you are doing. Shelia She126 Mon, 29 Aug 2005 00:00:00 GMT Thanks so much for writing. Sometimes I feel so alone in this situation!! He has started the Thalidomide and dex. He is very weak and tired. Although he has only been on it a week, I thought I would notice a little improvement. But he seems to be getting weaker. He has a sore throat which I assume is normal. The Dr. said he has "aggressive multiple myeloma" which I know is worse but he won't say what stage he is in. I know he is in at least stage 11 as they want him to have the stem cell transplant as soon as he has been on this for 2 months. I've looked on the internet to see exactly what it means but I can't find anything on "aggressive MM" I don't know if that means he has less time or what and the "Dr.Nurse" doesn't give us any time frame at all!! I get so frustrated. He doesn't want to have a stem cell transplant because he's 69 years old and he says he thinks he's at too much of a risk of dying of complications and I agree. I just wish they would be more up front with us. Thanks for listening! Pat w Sun, 04 Sep 2005 00:00:00 GMT Dear Pat, The thallomide is also what my husband is taking and when first diagnosed he also took the dex. Being weak will be a constant and on going part of the cancer because of the anemia and just the aggressiveness of the cancer. My husband didn't have the sore throat until the stem cell and the chemo they gave him was so strong it made him have sores in his mouth, throat and esophagus. He didn't eat any solid foods for weeks because they gave him fluids through an IV. The thing with this cancer is it is terminal, aggressive and no cure. My husband had his 2 years ago and this past May he had to retire the cancer was just taking such a toll on his body that he could no longer do his job and he his only 59. The transplant is a very big concern. Did they tell you that some people don't survive the transplant itself. My husband says if it comes back he won't have another one that's how awful the procedure was. When they do the transplant the chemo they use will kill anything living in his body as for as cells because they try to kill any cancer cells so when they put back in the good cells they will produce new white cells and boost him immune system. But they told my husband they were going to take him to hell and back and that's what he felt like. What kind of transplant do they want him to do? With my husband they took his cells. We didn't have a donor. Truthfully the Oncologist don't know how this is going to work. Our husbands are basically guinea pigs because before the transplant and thallomide they had maybe 2 years with this transplant maybe 5. The other thing and perhaps I told you already is that he also had to have bone treatments to strengthen his bone which now are causing his jaw bone to deteriorate. The treatment they use Aridia and another one I never can remember the name cause this to happen. It is a really big decision from what I've seen with my husband I can't really say it was worth it because every day he sits and counts the days he has left and what this does to them mentally knowing what's to come and how it will end. My husband just lost a close friend to colon cancer he also was only 59 was diagnosed maybe 6 months ago and it spread to his liver and lungs and it was awful. He's very depressed so I don't see the point sometime. If there's no cure why put them thru what really is worse because he can't do much he's to weak and he just sits and watches TV. My only salvation is that several times a week his friends come by and take him to lunch and hang out at pub and have a couple of beers. But you have to support what ever he wants to do. Please keep in touch, Shelia She126 Sun, 04 Sep 2005 00:00:00 GMT Sheila, It sounds like you & I are in the same boat with our husbands. When we go back to Dr. Sept.22nd. they want to start giving the IV's for strengthenting the bones also with the same thing your husbands on and I'm sure it will affect the jaw also. He just sits and watches TV also as that's all he can do without pain in the back. We've both decided not to do the stem cell thing. I'm like you, I think it's just an experiment thing at this time and it would cause him many,many other things at this stage of the game. If the thalidomide and dex. doesn't work, nothings going to. We can't afford to go to Chicago and stay for 5 weeks and then drive there for who knows how many times a week for rechecks just to hear something else has developed!! It's just to bad there's no hope but in reality, there really isn't. We just have to try to make the best of every day and have strong wills to be able to handle what comes each day, right???? Pat w Tue, 06 Sep 2005 00:00:00 GMT Hello Pat glad to hear from you and you're right about going back and forth it's constant until they do the transplant and then you go home and sit and go once a week then once a month and we were lucky when we went into remission it was 6 months. But today we got some disappointing news. My husband is no longer in remission. His protein level was at 0 for almost a year the 18th Sept. They did a blood test in July and he went back to his oncologist today to discuss starting back the bone treatment and the dr. told him then about the results and wants him to start taking Velcade which is in IV form twice a week and consider doing another transplant and he has already said no to that. But the Velcade has a list of side effects that goes on forever. So what to do?? I'm beside myself. It's so sad. Up until today things were going okay. He feels fine but they want to do another bone marrow biopsy and if he starts to take this velcade and also the dexamethasone, well he won't be able to function. He took the dex before the transplant and he had such mood swings and felt awful. We won't know any more until the 15th Sept. when they get together to discuss all this. Please keep us in your prayers need them now more than ever. Shelia She126 Tue, 06 Sep 2005 00:00:00 GMT I'm so sorry to hear your news about your husband. That's exactly why I don't think that stem cell is right for my husband! It just gives us FALSE hope!!!! Since he's been on the Thalidomide and Dex. he's had a terrible sore throat and his voice is hoarse and he is so very pale looking. But I guess that is to be expected. He goes next week for more blood work and the week after that for more to see if it's doing any good and if they need to start the IV's. I am praying for you and your husband Shiela, that's the only thing we can do. Keep me informed I really want to know. Pat Pat w Wed, 07 Sep 2005 00:00:00 GMT