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DougC
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Posted: Wed Jan 23rd, 2008 06:43 pm |
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I was diagnosed Nov 07. I consider myself very lucky to have Dr. Tricot, as well as his staff/team, treating me. I'm scheduled for my first transplant Feb 08. So far I believe things are heading in the right direction. I'll admit I'm a little nervous about the first transplant…since I really don't know what to expect. I'm assuming it won't be too much different than my first two D-PACE treatments…but I won't know until I go through one I guess.
I live a little over 100 miles North of Salt Lake City. When it comes to lodging, we've found the Hilton Homewood Suites to be a good choice (listed under lodging on this website). The staff is excellent and the hotel is only 2 years old.
Good luck to all who have chosen to be treated at the Huntsman. Again, I don't believe you'll find a better professional team than what Dr. Tricot has assembled. All of the folks working at the BMT center are professional and wonderful people.
I do have a question for anyone who has been down the MM road. Did you find you were able to recover your muscle mass and fitness level after your transplants? Anyone having any luck countering the effects of the Dex on their muscle mass? Can you actually build muscle while taking Dex? Of all the drugs I've taken, the Dex spooks me the most.
Best of luck to all,
Doug
Last edited on Wed Jan 23rd, 2008 06:44 pm by DougC
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Grumpy
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Posted: Tue Feb 12th, 2008 11:17 pm |
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It was a little difficult when I was on Dex but doable. I have been in remission almost 3 years and was taking thalidomide and dex plus working about 45 to 50 hours a week. I was pretty tired and so didn't work out like I should. About 9 months ago, I changed jobs (got better balance in my life) and oncologists. She took me off both thalidomide and dex and I have felt much better and have been working out regularly. As a result I have lost weight (the right way) and put on muscle mass. It has been great.
It's a tough decision to get off the drugs but my quality of life has really improved and I'm not burning up the thalidomide and dex option down the line.
I think we who have got MM have to understand that it's a matter of keeping as many treatment options open for as long as possible. I think we are all hoping that there will be a cure option in the next ten years.
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DougC
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Posted: Wed Feb 13th, 2008 03:04 pm |
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Thank you Grumpy for the response. At this point, I'm not sure what sort of treatment will follow the second transplant....hopefully a lower dose of dex, but I'll trust Dr. Tricot on that.
I couldn't agree more with your comment, we're all hoping to be around long enough for the experts to find a cure we can all utilize. I'm guessing a cure is going to be very unique to individual cells and genetic makeup thus will be difficult to apply to all of us. With that being said, once they figure out how to apply a broad cure, it should be a big success. I would think curing this cancer would be like winning the super bowl of blood cancers.
Best of luck to all of us
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jackson
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Posted: Sun Feb 17th, 2008 03:02 pm |
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| also diagnosed 11/7. put on high dose pulse dex. after two months, massive muscle and strength loss -- could not reliably bear own body weight while standing. couple of bad falls and breaks despite walker etc. taken off dex and quickly regained strength. new studies out of mayo suggest 1/3 the current dose of dex does as well or better than standard pulse dex dosage, hopefully less severe side effects. haven't tried it yet but reluctant to ever go back on heavy doses.
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Doug Martin
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Posted: Wed Feb 20th, 2008 03:42 am |
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Always listen to your doctor, and you won't go wrong. Dr. Tricot has always been there when I've needed him. He can talk to you about muscle issues. I'm 11 months past my second transplant - and almost done with my maintenance therapy. Getting regular exercise helps keep your muscles at a reasonable level. Sometimes you won't feel like exercising (like tonight - I don't really feel like exercising - but I'm getting on a treadmill and watch TV for a while during my exercise tonight). Ask your Doctor his advice concerning the timing of your exercise - and whether there is an advantage to waiting 12 hours after you take your dex before you exercise - as exercise can have an impact on the amount/level of dex in your system.
Get regular exercise, good food, lots of water, stay away from alcohol. Two foods that have very high protein, and not a lot of extra calories are cottage cheese and yogurt. They also have calcium which is good for all of us. You might look into Yoga - it helps to keep all your muscles active I believe. There are many others who are more knowledgeable regarding Yoga than I am.
It's a good thing to keep working on your muscle mass. It generally means that everything else is going well. I was diagnosed with MM pretty much the same day I quit working - had two stem cell transplants - and resumed work after 7 months. I wouldn't want to do that when I'm 80 years old - but I can do it again if need be.
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DougC
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Posted: Sun Feb 24th, 2008 12:20 am |
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Thanks DougM for the advice. I will certainly be bouncing questions and concerns off of my doctor and hopefully some resemblance of what I consider to be quality life will survive.
I had my stem cells placed back into me 8 Feb and began grafting 18 Feb. I was admitted into the hospital on 16 Feb when a bug decided to invade my port/body. I'm now home taking, what I consider to be, high doses of vancomycin. Aside from some terrible gut problems and Vanco seeping out of my pours and throat, the hardest fight I fought….and continue to fight…is/was between the ears. It was a tougher event for me than the D-PACE, but I'm home…how can I complain too much about that?
I would like to suggest to anyone who is considering having a stem cell transplant to ask questions about the entire process…to include inpatient care. I suggest this because, you may begin the process as an outpatient, but don't be surprised if you find yourself being admitted. If the latter is the case, I just want you to know, you haven't failed in your treatment, your caregiver hasn't failed, the inpatient folks know how to treat you, and you're there for a reason, to get better. In fact, if you're admitted, your caregiver probably did an outstanding job of recognizing your fever and placing the call to the nurses.
Good luck all…..I've got a battle between my ears to get back to
Doug (47 year old guy still trapped in the moment and scared to death)
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gratefulVickie
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Posted: Sun Feb 24th, 2008 03:55 am |
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When I had my stem cell transplant I wasn't able to be at home for over six weeks. (Three in the hospital and three in a location within 5 min. to the hospital) This was in Portland, OR, so I don't know what the requirements are for where you are being treated. My husband took off work for 2 months to be my caregiver. I'm glad you can be at home!
I can feel for your mind battle right now. I don't think anyone can be prepared for the change in your life this makes. I kept hearing that it would get better, but I didn't feel like i would ever improve. I found that it really does get better, you just have to be very patient and take each day as it comes. Also, everyone reacts differently. What is a breeze for some is like climbing Mt. Everest for the rest of us! I have a quote taped to my computer that has been there since I returned from the hospital.
"Be great in little things." Frances Xavier
It helps keep things in perspective.
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Doug Martin
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Posted: Sun Feb 24th, 2008 06:24 am |
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Hello DougC. You sign off with the phrase - "47 year old guy still trapped in the moment and scared to death." Just remember three things if you will:
First, there are lots of others out here with MM too - and we are on your team and pulling for you - as are all MM family members - all MM doctors, nurses, and staff - MM researchers - and lots of others. They are too numerous to list. Think of those instrumental in putting together the Huntsman Cancer Institute and the University of Arkansas for Medical Sciences, and countless other facilities committed to addressing cancer. With such a great team - all of us on the same team - there is no reason for you to worry or be scared.
Second, remember the movie "Ferris Bueller's Day Off (1986)?" One of the characters in that movie was Cameron Frye. He lived so much of his young life being afraid. At the end of the movie - after trashing his father's Ferrari - he decides to take a stand - it really wasn't a stand against his father - it was a stand against always worrying and being afraid. You just have to decide to quit worrying about anything. After all - 200 years from now - we end up in the same place regardless of whether we worry. Being afraid and worrying is useless emotion (not to be confused with useful emotion). Love that movie.
Third, remember the disciples on the boat with Jesus. They were afraid when a storm came upon them while they were crossing a lake. Jesus was sleeping calmly, but the disciples were afraid, incorrectly believing they were in jeopardy. Jesus heard them, awoke, arose, rebuked the wind and the raging water, and there was calm. Just like that. Some higher power created you - and that higher power has the ability to provide you with peace and calmness. Just like that. See Luke 8:22-25.
Regarding exercise - remember that it's not as critical that you get lots of exercise when you exercise - the key is to regularlly exercise - even if you don't feel like it some days. 3 situps are better than none. 6 situps are better than 3. Walking on a treadmill gently for 5 minutes is better than no exercise at all. Likewise, 10 minutes on a treadmill is better than 5 minutes. Get what you can each day - and call it "GOOD".
I have met so many good people and friends during my time with MM - which has only been approximately 1 year and 4 months. But they are real and true friends - and special people who have been involved in my treatment. Had it not been for MM - I would not have known these good folks. There is always something for which we can give thanks - and I give thanks for all those things. Included in my list for which I am thankful are the many good things headed our way as MM warriors, and also for those things that we will all have in our personal lives aside and apart from MM.
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DougC
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Posted: Fri Mar 7th, 2008 10:48 pm |
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Thanks DougM for your advice and understanding. It helps to hear from those who have been through this.
Can you share your thoughts/feeling regarding the second transplant? What were your thoughts about getting a second transplant after receiving your first?
Last edited on Fri Mar 7th, 2008 10:55 pm by DougC
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DougC
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Posted: Fri Mar 7th, 2008 10:55 pm |
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Thank you Vickie. I can relate to your displacement. We too had/have to move within 5 mins of the hospital...we stay in a hotel. Our caregiver sure have sacrificed a great deal, haven't they. I'm not sure, but I think that is the myeloma battle field for most of us. It's a very expensive fight in many many ways. I'm so thankful for my caregiver (wife)...she's amazing.
Thank you very much for your words of understanding. As you say, I'm sure it will get better.
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Doug Martin
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Posted: Sat Mar 8th, 2008 01:09 am |
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My first transplant was around January 10, 2007. My second transplant was around March 9, 2007 at UAMS in Little Rock, Arkansas. All of it was outpatient and I didn't spend a day in the hospital. I was wanting more time between the two transplants, but Dr. Grido Tricot said that he wanted me to stay on schedule - and I had recovered sufficiently from my first transplant just in time to go through the process again by March. My wife is a nurse, and was with me for all of my treatment in Little Rock, Arkansas, except for one week for the first transplant, except for two weeks for the second transplant, and except for one week for the induction and consolidation treatments. My folks spent four weeks with me in Little Rock (God bless them), and my sister from Iowa spent one week with me. My wife spent the "tough" weeks with me - and was wonderful. Got to know her better as a nurse. Dr. Tricot wanted me to go through the process as quickly as my body would allow me to proceed, and I did my best to comply with his guidance. From the beginning of my induction therapy to the end of my consolidation therapy was approximately 5 and a half months.
I think the key to the process is lining up good support, having a positive mental attitude, and listening carefully to your doctors and nurse practitioners. Don't be afraid to ask questions. An educated patient and caregiver are more effective in dealing with challenges, and preventing problems.
I didn't read carefully enough my doctor's orders, and took only one Ranitidine each day during my second transplant - whereas I should have been taking two Ranitidines each day. As a result, my stomach took more of a "hit" than it should have taken. Listen and read very carefully your orders. That was about my only mistake - but it was fixable. Taking care of your stomach and gastrointestinal tract during transplants is very very important. Some of my favorite foods during this time were cottage cheese, yogurt, Campbells Soup (TM) Chicken and Stars, and those were my main ones.
To tell you the truth, if I have to go through the process again down the road, I can do it with no problem. If I have to go through the process again - which I may not have to according to what I am hearing - I'm confident I can do it if I have the same doctor and my wife can be with me to be my caregiver. No problem - no sweat - just a little pebble on the path to the future. I look back on my days in Little Rock with fondness. We had good friends going through the program with us - they supported us and we supported them.
So - back to the original question - how did I feel about getting a second transplant after receiving my first? I was just ready to "get it on." The chemo they gave me for the second transplant was stronger than what they gave me for my first. I was 53 years old at the time of my two transplants. I think the first transplant is a little like "dress rehearsal" and the second transplant is "opening night" - or as we used to say in Naval Aviation - "Battle Stations - This is not a Drill." Obviously, your doctor will make this call. He or she will probably make the decision in part on how you handled the first transplant. If you handled the first transplant "with no problems" and things look good - you may be able to handle a little stronger regimen the second time around if it is called for. If you have problems on the first transplant - that may be a factor that the doctor takes into account in deciding how much chemo to give you the second time around. It probably depends on a lot of factors though.
Personally - when I got rid of that darned bag they made me carry around - everything went fine. Lots of good cable TV. I had my laptop computer to browse the web and send and receive emails from my friends. Plenty of sleep. Nice walks in Little Rock. Got to see my friends at the clinic every day or every other day. Loved the oriental food in Little Rock. But the food there wasn't as good as the food at Huntsman. I like Huntsman's food better. I also enjoy the atmosphere at Huntsman. I've made two trips to Huntsman since transferring there last summer, and I'm scheduled to go again in April.
Parting words of advice for transplants:
#1 - Get a good doctor and listen to their advice.
#2 - Take care of your stomach during transplants - it is important to manage the symptoms that come up.
#3 - Stay infection free (I washed dished that I took out of the cupboard again before I used them even though they had been previously washed).
#4 - Get good caregivers to be with you.
#5 - Make sure you have cable TV and internet connections.
#6 - Get to know others going through the process - and support them.
#7 - Don't believe all the stuff you see on the internet. I'm convinced that Huntsman is leading the way on treating MM - and that when the results are in 10 years from now based on what is happening today - people will be amazed at the results that can be achieved.
#8 - Give thanks for something special each day.
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DougC
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Posted: Sat Mar 8th, 2008 06:47 pm |
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DougM - That's great information...thanks for sharing your insight. I recently completed my first transplant and I'm scheduled for the second in May. I wasn't able to avoid the infection as you mentioned in #3. I won two trips to the hospital and I'm currently considering becoming a shareholder in whatever company supplies Vancomycine...I've run a lot of that stuff through my body the past couple of months. I've been fighting a staph infection...apparently from my own body/skin. I wear my mask without fail, yet I haven't been able to stay clear of the staph infection. As for the gut issues, those were something else. I plan to do a much better job staying on top of that during the second transplant. I think I need 2 months just to rest my gut and get things back to normal in that department.
You mentioned that you're in complete remission. Can you tell me when you achieved CR? I achieved CR before my first transplant. My understanding is the goal now is to continue killing as many cancer cells as possible through these transplants.
I hope to finish this treatment in good standing/health as it appears you have. If I can stay clear of that staph infection and stay on top of the gut issues, I think I have a good shot.
Finally, I really appreciate your comment, "don't believe all that stuff you read on the internet." People have been telling me since day one that I read way too much "stuff" and it's the main reason the battle between my ears is what it is. I'm trying to control my response to what I read...it's tough, but reading messages like yours makes it easier.
Thank you
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Doug Martin
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Posted: Sat Mar 8th, 2008 07:58 pm |
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One of the reasons you shouldn't believe everything you read on the internet about multiple myeloma is because the book hasn't been written yet on the treatment we are receiving. Transplant chemo therapy that includes velcade, and maintenance therapy that includes velcade, dex, and thalidomide, hasn't been measured long term. We know it will be much more effective - how much more effective we cannot yet know for sure. Multiple Myeloma is no long an "incurable disease." It can now not only be managed - it is potentially curable in a number of cases.
I was told that the chemo therapy that I was given during my transplants continued to work in my system killing mm cells for up to 6 months. It all depends on what you receive and how much.
I'm guessing I reached complete remission some time around May, June, or July of 2007. I had a trace only in May. When my blood test was taken in August 2007, it showed complete remission. The transplants, consolidation therapy, and maintenance therapy were one continuous thread - all connected together. Hopefully what one didn't get - the other would take care of.
Today - there is absolutely no reason that each and every one of us should be anything other than optimistic.
DougM
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DougC
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Posted: Mon Mar 10th, 2008 08:01 pm |
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I'm guessing you were under the Total Therapy III progam? I believe Dr. Tricot has made a few changes in his approach since leaving Ark...but I'm not sure what they are.
It would be nice to see a cure come along in the next couple of years with all of these new drugs and drugs in trial.
How long after your second transplant before you were back to work and doing things you were doing before myeloma? Are you still wearing a mask out in public? Or, has your immune system taken over?
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Doug Martin
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Posted: Tue Mar 11th, 2008 01:02 am |
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| I don't wear a mask in public. I only wear a mask if I have to go to my local hospital and it is filled with folks who have the flu. My immune system seems to be pretty good. I went back to work about a month afterr my consolidation therapy was over. My law firm needed me to get back to work. I tend to think that work - if not overdone - is good for us even when recovering from MM. Each person may be different and you have to talk to your doctor - but I would think you should try to get as much exercise and work in as you can reasonably tolerate - but don't over work yourself.
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DougC
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Posted: Tue Jun 3rd, 2008 06:27 pm |
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| Update: I started my induction chemo for my second transplant on 5 May 08 and received my stem cells on 9 May. I received roughly 3X as many stem cells on my second transplant than I received during the first. The reasoning for this is, the second transplant is going to kill off the stem cells from the first, so why waste them. The second transplant made me more tired than the first and I had more problems with nausea this time around. However, I would have to say for me, neither transplant was that bad physically. I didn't get mouth sores during either transplant…thanks to the nurses and their ice treatment. I also managed to avoid infection during the second transplant thus didn't see any hospital time. The chemo used for the second transplant is different than the first thus serves a different purpose and has different effects on each individual. The BCNU that I received first made my head feel like it was going to explode, but that only lasted a few minutes. BCNU is a great myeloma drug and the side effect I experienced wasn't that bad. The Melphalan I received caused the nausea, but it's such a good myeloma killer…it's worth it. The Gemzar I received really isn't a myeloma drug at all. It's really more of a DNA cell repair drug and as far as I can tell, the Huntsman is the only place currently using it for stem induction treating myeloma patients. I'm home now building strength for the consolidation round of D-PACE. Don't fear either transplant…you're in good hands and the fear-hype from the internet is just that, fear-hype...I'm noiw winning the battle between the ears :-) Bestest to all and feel free to e-mail if you have questions for a fellow patient.
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Doug Martin
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Posted: Sun Jun 15th, 2008 12:28 pm |
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Wonderful news to hear. Sounds like you are following all the advice your medical team has for you. The longer you are around them and listen to them - the smarter then tend to be proven. Lots of water. Moderate exercise. Take your "stomach meds" i.e. Ranitidine if you are on it. And take the total amount they advise. I also can't remember any time that yougurt wasn't a good food and very helpful. Sounds like you are doing very very well - and have made much progress.
Please pray for government and private funding for myeloma research, and for those at Huntsman and elsewhere who are leading the research efforts to bring greater relief to those suffering with multiple myeloma as well as all other forms of cancer.
Enjoy Sunday - and always take a day of rest each week.
Doug Martin, Patient of Dr. Guido Tricot
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Lynn
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Posted: Fri Jun 20th, 2008 08:37 pm |
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I am so glad to hear someone has come off of the Thalidomide & dex. My husband has been on both for over a year. Yesterday his doctor took him off of both because of the excessive weight gain and numbness in the fingers and toes. He has had 9 kyphoplasty - so he doesn't need the added weight. Thanks for the info.
Last edited on Wed Jun 25th, 2008 02:46 pm by Lynn
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Doug Martin
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Posted: Fri Jun 20th, 2008 10:36 pm |
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I have now been "off" thalidomide for about 2 months, and it seems that my neuropathy is lessening. The doctors have told me that it "should" go away - or be reduced. I try to stay optimistic. I have noticed that sometimes it is actually difficult to tell whether the neuropathy in my toes is improving or not - but all in all I think there has been an improvement over the last 2 months. Do any others out there have a difficult time "judging" whether or not their neuropathy from thalidomide is getting better or not after they quit taking thalidomide? Lyrica seems to be helpful - and all in all I think I'm making improvement.
Treatment for MM is like a tough football practice - it hurts some at the time - but it will pay off in the long run.
Just think - if they make as much progress in the next 10 years as they have in the past 10 years toward handling MM - all of us are in "pretty good shape."
Stay optimistic - follow your doctor's recommendations - and get exercise.
And pray that there is Divine inspiration given to all those who seek a cure for cancer and MM.
Doug Martin
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DougC
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Posted: Mon Jun 23rd, 2008 11:13 pm |
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Thanks for the encouraging words Doug. As for the neuropathy, I've just completed my first cycle of the Velcade, dex, thalidomide maintenance routine and I'm already experiencing numbness in my hands and feet…not sure how I'm going to make it 2 years on this stuff--I'll give it my best. The pads of my feet seem to be especially sensitive. I'm guessing the thalidomide is the main culprit for the numbness. I've also noticed my hands ankles and feet have swollen a bit. I believe the Velcade might have something to do with that. Did you experience swelling at all? I've also found that I'm very dizzy when I stand up and have periodic tremors that basically run throughout my body. Did you experience either of those side effects? Maybe some of this is happening because it has only been since May when I had my last transplant…I don't know.
It's funny you should mention football practice; these side effects do remind me of two-a-days in august…thought I'd pass out more than once back in those days.
Thank you for sharing your experiences with us DougM…your story is very encouraging to me and I'm sure many others
DougC
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Doug Martin
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Posted: Tue Jun 24th, 2008 03:12 am |
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I experienced no dizziness or tremors from thalidomide, dex, and velcade (for 11 months). I didn't start taking the "thalidomide, dex, and velcade" combination until after my two transplants and consolidation therapy. Since your last transplant was in May - you have some more recovering to do and it will surely come. I think my last transplant was March 2007 - and I went back to work June 2007. After 11 months of thalidomide, I could barely (and I mean just barely) detect some very slight numbness in my fingers - but it did nothing to slow my typing or any other use of my hands. It's not even uncomfortable. Only discomfort (neuropathy) is in the very bottoms of my feet and toes - but it's certainly manageable. 2 months post thalidomide - and I'm hoping to make more progress with the neuropathy. It doesn't prevent me from walking on the treadmill at night. By the way - I've decided that two of a person's best friends when you have MM - are having a good treadmill, and eating lots of yogurt.
If things don't go as well for you as the "average" or "standard" MM patient (and there are no "average" or "standard" MM patients) - then you should recheck the following: 1) make sure you are drinking at least 3 litres every day; 2) make sure you are religiously taking all the meds and vitamins your doctor tells you to take, and 3) make sure you get moderate exercise each day.
If that doesn't work - talk to your doctor again about your specifics.
Bonus comment: If you are on coumadin, I believe the recommendations from the manufacturer are that you should avoid green tea. If you are not on coumadin, you can drink green tea (unless doc tells you to not drink it), it doesn't have very much caffeine, and it beats drinking water all day long.
DougM
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DougC
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Posted: Tue Sep 2nd, 2008 12:51 am |
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The hard part is over, I completed the consolidation round of D-PACE. I now have 2 years of maintenance to work through. However, no more high dose intense chemo! The consolidation was uneventful as far as stomach problems and nausea...no problems. I'll now start focusing on getting back in to shape both physically and mentally so I can return to work and do the things I've missed since dx in Nov 07. Wow, never would have thought I would have survived two stem cell transplants and 3 rounds of D-PACE....but here I am, not feeling too bad, and I'm in complete remission!
Back in Nov I had a large tumor crushing my spinal cord. Dr. Tricot had me admitted and started an emergency dose of D-PACE. That round of chemo saved my life. The tumor easily could have killed me. However, the chemo did its part and knocked the tumor down. I'm very thankful Dr. Tricot didn't choose radiation and that he was there at the Huntsman to treat me.
One thing DougM mentioned a while back in a post that I feel now is probably the best advice and most important thing I've read on these message boards..."follow your doctor's orders exactly." That includes wearing a mask and not doing certain activities.
I guess I'll close out this message board thread now. The 20+ posts on this message board capture the entire event as my family, friends and I went through it.
My best to all those who have gone before us in this battle and those who're just beginning the fight....my prayers are with all of you
DougC
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Doug Martin
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Posted: Tue Sep 2nd, 2008 03:08 pm |
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To DougC - we are happy for you and your family because of the good news. I think you have done a good job in sharing with others on this site. I'd like to see you continue posting on this thread. If you start a new one - please let us know. In any event - we would like to hear from you as you progress through your post-transplant treatment. The very best wishes to you.
Sincerely,
Doug M
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DougC
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Posted: Tue Sep 2nd, 2008 04:51 pm |
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Thanks Doug. I'll still be reading the board and posting. I just figured this thread had run its course. Thank you for being there to answer questions. I sort of use you as the standard. I'm hoping to get back to work in a similar timeframe as you.
I hope your maintenance is going well and you're good health
Best to you
DougC
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Doug Martin
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Posted: Tue Sep 2nd, 2008 07:23 pm |
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| Everything is going well with me, my family, and my treatment. It has now been a year and 5 months since my two transplants. I think I've missed only about a week and a half of work over the past year and a half. I'm optimistic, and fortunate. If anyone has questions, please contact me.
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DougC
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Posted: Fri Oct 17th, 2008 03:42 am |
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DougM,
I'm curious, did your immunoglbulins IgA, IgG,and IgM tank after your tandem was complete? If so, how long did they stay low? Did you have problems during cold/flu season?
Thanks
DougC
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Doug Martin
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Posted: Fri Oct 17th, 2008 01:02 pm |
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| My Ig levels went down slowly after the transplants. They are increasing now. I still have another 6 months of dex. While on dex, they will stay low I am told. My Ig levels are on the way up now, even though I am taking dex. I've been on acyclovir during this time. This winter I'm on acyclovir and also a preventative antibiotic. Depending on your situation, you may or may not need to be on acyclovir and or a preventative antibiotic. I'm told it is normal for Ig levels to be low during maintenance therapy.
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DougC
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Posted: Sat Oct 18th, 2008 02:20 am |
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Thanks DougM. Yes, I'm on acyclovir and Dapsone. It's comforting to know you can function in a working environment with low immunglobulins. Sounds like things are going well.....same on this end--thank you very much
DougC
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DougC
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Posted: Sun Sep 13th, 2009 04:15 am |
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Well, I've been done with maintenance chemo and steroids for a month now. I have to say, I was caught off guard on exactly how I would feel. I knew from the begining that Dexamethsone would basically destroy my lean muscle mass (load bearing muscles first) and joints. However, I never seemed to feel much pain. Well, all of that changed when I came off of the Dex. For the first time, I've had to deal with some serious pain issues. Add on top of the painful joints, neuropathy, and things have been rather ugly. However, I think this can be reversed; or at least dealt with.
I know my family and friends have all had to redefine life with me...I wasn't the only one faced with change as you all well know. I know it kills my wife, daughter, and friends to see me walking like an 80 year old man. However, if this is my new life, then I'll/we'll just have to adjust a few things. I still go walking at the gym, do some minor weight lifting, and hike/hunt/fish. In fact, I climbed the mountains after grouse today......boy did it smoke me! I'll keep trying to improve my quality of life; that's why we stepped into the arena to begin this fight, right?
We'll never be the same as we were before getting hit with myeloma. However, people are forced to redefine their lives all the time due to all sorts of unforeseen events. We're no different. There's a lot of suffering going on out there. I consider myself truly blessed to have been given the chance to live. I've said it before, Dr. Tricot and his medical team have saved my life. I still can't believe that John Huntsman brought the Tricot family to us just 3 months before I was diagnosed...amazing.
I get asked occasionally, what I've learned from all of this. Ya know, all I know is you have to do time on this side before getting to the other side. Some do 100 years, some never make it out of the womb. Sorry, but that's all I know. So to me, I guess this is normal. We're not unique. We're just living life the best we can
My best to all of you
DougC
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JMG53
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Posted: Sun Sep 13th, 2009 02:55 pm |
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DOUG DIAGNOSED 12/06 HAD 2 ROUNDS OF CHEMO AND RADIATION AND HAD A STEM-CELL TRANSPLANT 5/09. THE DEX QUESTION YES I HAVE REGAINED MY MUSCLE MAS AFTER 2 ROUNDS OF DEX/THALITMIDE DEX/REVLAMID. HATED THAT STUFF CAUSED ME TO BECOME DIABETIC. DOING GREAY NOW KEEPING MY FINGERS CROSSED
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tmiller
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Posted: Tue Sep 15th, 2009 09:53 pm |
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Hi I just found out on 09/09/2009 you are 100 miles north of slc do you think we could ever talk I have a million questions ? Tmiller. elkhunter1960@yahoo.com
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DougC
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Posted: Tue Sep 15th, 2009 10:39 pm |
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JMG53 - thank you for the reply. I hope your treatment continues to move along as planned. I was on dex for ~2 years. I believe I can reverse some, if not all, of the effects. I will continue to do my part through will and determination and we'll see how my body responds.
Best of luck to you
DougC
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DougC
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Posted: Tue Sep 15th, 2009 10:41 pm |
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tmiller - I'm more than happy to speak with you and I'll do my best to answer any questions a patient like myself might be able to answer. I sent you an e-mail
Best of luck
DougC
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