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jazzmom
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Posted: Tue Mar 3rd, 2009 07:30 pm |
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My mom (63) just finished first Stem Cell Transplant in SLC, Ut. We are finally home, but she still cannot eat. We are trying Marinol?, Zofran, Compazine, Reglan, Ativan and Carafate? (not sure of all correct spellings). Nothing seems to bring back any appetite. Alot of what she does eat, gives her diarrhea. Always complaining of pains in her stomach. She had the melphalan as her chemo at Transplant? She is losing weight and getting weaker as she nearly gags trying to get something down. Doctors just keep saying she has to eat? Any ideas?
Has anyone else out there had this much grief after transplant? Is this normal and gets better with time. Does it indicate a bigger problem brewing? We can only hope the transplant was successful. It scares us that the myeloma is already rearing its ugly head all ready? Also, how long before it is safe to eat out somewhere? Any info would be helpful. She is pretty weak. Thanks
Last edited on Tue Mar 3rd, 2009 07:32 pm by jazzmom
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DougC
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Posted: Wed Mar 4th, 2009 03:39 am |
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I wouldn't lean toward "a bigger problem brewing" just yet. Your doctors would know based on lab work and symptoms. I'll tell ya, eating was not, and still isn't a joy for me most of the time. Dex really puts the clamp down on my taste buds. I drank protein shakes and others I know drank Ensure and Boost. Getting the stomach to function and the bowels to work right is a challenge most of us face/faced. Velcade can cause diarrhea; Melphalan raises cain with the entire inner workings. Give it time. I hope she's not taking all of those stomach drugs together. Reglan 30 minutes prior to meals worked best for me...I believe it was twice a day. Compazine and zofran worked best at the beginning, but really made things worse later. Ativan was a life saver, but too much gave me cramps...bad cramps. I took it for my anxiety, not stomach issues. Oh, zolfran gave me bad headaches. Carafate worked at the beginning, but again, it lost it's punch after engraphment. I'd pick Reglan personally. Yogart helped a lot. The dex has caused/and still does cause me more gagging, taste, and speaking problems than any other drug to include Melphalan. I hate water, bread, you name it. However, I force myself to drink large amounts of water daily.
I know people who ate out a lot despite what the doctor told them. However, I wouldn't risk it. Home prepared food is much safer. There's been enough in the news the past few years to scare anyone out of eating bagged salad...used in many restaurants...peanut butter products, you name it. If it were me, I'd only eat from trusted sources.
I'm glad you got your mom down for treatment...give it time. Stay on course with labs and followup. Where did she get her transplant? Is she getting a tandem? If you feel you're not getting the answers you need, pick up the phone and call your doctor or e-mail him/her. Don't sit home guessing.
BTW, I lost 30+pounds with first transplant and dumped 10 more with the second. I'm now back to pre-diagnoses weight.
Best of luck
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Annick
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Posted: Wed Mar 4th, 2009 07:23 pm |
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Some patients have a hard time recovering their appetite, and some patients regain their appetite quickly post-transplant. That's normal, and I don't think you should be worried about a return of the MM because of these symptoms.
Is your mother a patient at Huntsman? Is she taking any probiotics to help restore the good organisms in the digestive tract that were wiped out by the chemo? That may help with the diarrhea.
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Posted: Wed Mar 4th, 2009 08:04 pm |
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Hi Jazzmom,
The Huntsman Cancer Institute Myeloma Program has a podcast on eating after transplant. Our registered dietician gives advice to those experiencing a loss of appetite or other side effects that make eating difficult. Some of the tips may be helpful to your mother. Just click on "Listen Now" when you get to this page:
http://www.huntsmancancer.org/groups/myeloma/podcast.html#nutrition
Please let us know if there is anything we at Huntsman Cancer Institute can do to help you or your mother, especially since she is being treated in the same city as where we are located.
All the best.
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jazzmom
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Posted: Wed Mar 4th, 2009 11:23 pm |
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 Hey Doug,
I don't know how often you get told, (probably not often enough) but you have been the single most helpful source of information for me. I have read your postings for all the people scared and asking questions. You are informative, rational and calming. This has been a terrible roller coaster for all of us.
My mom was a beautiful young active woman until a few years ago. We took her to so many doctors and received no answers as to what was wrong for so long. We believe she has had this for nearly 5 years. On July 4, 2008 she was so sick I took her to the hospital instead of our wonderful cabin where my dad and the rest of our family was waiting for us. The doctor came in, bluntly looked at me and said "well, her kidneys are in trouble, she has cancer." I was unprepared and nearly collapsed. I then had the terrible responsibility of calling my dad and family and telling them to come home. I am only telling you this because you get it. Myeloma and other cancers are a disease that happen to people, families. Just before the cancer dx my brother(29) had a new baby, and my sister (41) lost her 16 year old daughter in a car accident. Life happens. Some days all I want to do is cry, I am overwhelmed. I left my family and stayed in Salt Lake CIty with mom for four weeks. Watching her night and day, sleeping by her side in the hospital. The same thing other cancer patients and their loved ones all over the country are doing. We are hit in the face with this and we do what we have to do. We keep learning and pressing forward. We try not to think about how hard it is or how hard it has been.
So, it is important that YOU know that you have been an invisible rock for so many. I am a constant student, and I know I nearly drove the nurses and doctors crazy. Many times, they were not on top of things, as they have so many patients, and I questioned them (nicely of course). But this is my family, and my mom is not a number, a statistic, a study participant, she is my mom. I had to remind them of this. Data can be scary, real life experience like yours has proven the most helpful.
Your info on the Zofran, Marinol etc. is very helpful. All the doctors say is "you'll just have to get her to eat." Thank you so much for all you do for all of us. You are great. Thanks again. Good Luck.
Last edited on Wed Mar 4th, 2009 11:32 pm by jazzmom
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DougC
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Posted: Thu Mar 5th, 2009 02:50 am |
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Jazzmom - Thank you for the kind words. It sounds like you've been...and will continue to be...one heck of a caregiver. You described the experience perfectly. You're going to be a valuable resource for future patients and caregivers if you choose to be. Our experiences are so unique...I'm sure you'll have a lot to offer.
I can relate to the crises management aspect of your post as well. My wife and I were hit with very disturbing news concerning her health just 4 months before my Dx. Needless to say, I've learned how to be a caregiver from her if/when I'm called to answer the call and return the love.
btw, one of the major challenges for me has been redefining who I am. That includes physical activities, looks, and how to interact with others...basically, not be a cancer patient in everyone's eyes. I was very active; I loved my hair...yup, some of us guys dig hair too...playing guitar with the boyz; all that jazz ;-) . Suddenly it was gone. That's why I say, Adivan was a life saver for me. I believe your mom is going to be ok. She's still the beauty you remember and the energy will return. It just takes time for all this "stuff" to fall in to place. Having my port removed made me feel more whole. No doubt getting off these drugs will again take me closer to feeling normal...especially the Dex. Ya know, I haven't slept through the night since I was diagnosed in Nov 07. I wake three times a night minimum and walk around. I don't dream much either. I've read others who also experience the same thing. I don't take anything to help me sleep and I don't take Adivan anymore. However, I don't sleep either. Maybe it's that stick of the Lovinox needle in my stomach I give myself each night that disrupts things....LOL...doubt it...but it ain't normal either.
My wife, daughter, friends, and the medical staff, all were amazing and continue to be. I too take a lot away from this message board and the other one I referred you to months ago. Even more so, I love meeting and talking with my fellow patients and families at the clinic...it's like we share our emotions through word, gestures, facial expressions...there's just no substitute. I hope some day we all will meet. I still remember your first visit to this board. I'm very glad you chose to travel down to SLC.
Ok, I'm on Dex this week...obvious by my rambling...I'll sign off now
I wish you, your mom, family and friends the very best.
Doug
Last edited on Thu Mar 5th, 2009 03:13 am by DougC
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