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lois b
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Posted: Sat Feb 21st, 2009 05:14 am |
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I am so glad to have found this chat group. I don't think there's anything like it elsewhere, or at least I haven't found it yet.
I was diagnosed on January 6. I'm on a fast track, I hope, to SCT in late spring.
I'm on Velcade, dexamethasone and thalidomide, plus all the usual "helper" drugs for side effects. I've pretty much cut out the narcotics and the sedatives, because I don't like being drugged up, but I'm still taking an Ambien to help me sleep.
So here's the first really unpleasant side effect: constipation. I've always been a big veggie and fruit eater, and since being diagnosed, I've increased my fiber intake event more. but a few days ago I started taking sucralfate to help with the GERD from the dex, and for the first time in my life, I know what all the fuss is about! No wonder people get obsessed with their bowels! My attempt to unclog the pipes with a garden variety laxative was a terrible experience.
So what now? I know about increasing the fiber. and drinking more water. and exercising. Is there some magic formula that I'm missing?
Sorry to introduce myself to the group on such a grubby subject. But that's me: see the problem, fix the problem, get back to life...
Lois
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Jo
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Posted: Sat Feb 21st, 2009 05:33 pm |
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Hi Lois
Sorry about your "clogged" drain..I have been to BOTH extremes with this issue and I have to say I think this is the worst! I used to take a stool softener or 2 each day just to keep things well...soft... I could never take any of the other stuff without getting terrible cramps! It can't hurt to try this for a week and see if it gets you back on somewhat of a "normal" schedule. Good Luck... Jo'
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Chat Moderator
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Posted: Mon Feb 23rd, 2009 06:50 pm |
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Hi Lois,
We usually give our patients 100 mg of Colace three times a day and Senna twice a day to help with constipation. These are options you may want to look into to provide you with the relief you are looking for.
Take care,
Myeloma Chat Moderator at Huntsman Cancer Institute
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destiny
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Posted: Tue Apr 28th, 2009 11:07 pm |
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i was on morphine for a few months and i got where i could not eat because everything i ate sat in my stomach for 6 hours and then when i ate the food sat on that and then it all came up to the point i was vomiting constantly, had chills and so on , went to my GP and he said the morphine slowed everything down to almost a stop and gave me something called enulose syrup which i take at bedtime, no cramps and boy does it move stuff out of you!! I could not live without it since i take oxycontin and oxycodone for pain.
good luck and know that any kind of pain medication will do this to your system!
des
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lois b
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Posted: Tue Apr 28th, 2009 11:44 pm |
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Thanks, Destiny:
Now that I'm done with Thalomid and Dex (for the time being), and have cut way back on the pain meds and tranquilizers, things are moving along much better!
Of course, next week, when the SCT begins, who knows what will happen!
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destiny
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Posted: Tue Apr 28th, 2009 11:58 pm |
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Hey anything that helps in that situation is a good thing right? Good luck with your next go around.
what type do you have if i may ask?
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lois b
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Posted: Sat May 2nd, 2009 03:21 am |
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plain old MM stage III
I was supposed to start the pre-SCT chemo today, but I developed a skin infection, so now I'm off for two more weeks until that heals up. very frustrating, but what else can you do? at least it's not swine flu!
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destiny
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Posted: Sat May 2nd, 2009 06:05 pm |
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sorry about the skin infection setting you back i figure these happen for a reason so hang in there.
Do you know if we are sposed to take extra special precautions in our daily outings because of this swine flu thing? Like wearing a mask to the store? I know i have been advised to stay away from crowded areas etc.
i had to quit my job at walgreens because of the bone pain and i kept getting sick because of all the people coming in with sick children and they get sick and the money is handled by sick people and lets face it...its a drugstore and sick people are sposed to go there to get there Rx's..lol..
sorry to rattle on...
des
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lois b
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Posted: Mon May 4th, 2009 07:43 am |
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Hi, Destiny: I haven't been going out much in the past few months, not so much because of fear of infection, but because I just didn't have the stamina for a lot of socializing and other events! I took a leave of absence from my work, and I'm glad I did. The side effects of chemo have not been unbearable, but they do mess with your immune system, and they sap your energy pretty quickly.
That being said, in the next few days, as I enter the SCT process, I'm aware of how much contamination there is everywhere! I wash endless loads of towels, and wash my hands obsessively. I'm going to try to hire someone to come in and give my little house a thorough cleaning, including the carpets, so that when I come home I won't be worrying about stirring up dust. Tomorrow, if the weather holds, I'm going to finish putting in my flowers, because i won't be able to do that later this spring, and I'd like to be able to look out the windows on something cheery as I recuperate. I'll dig out a mask before I start throwing potting soil around!
Be sure to ask your doctor and your other health advisors about what is safe for you. I would guess that there are much more common viral and bacterial contaminations around that will potentially affect you before the swine flu reaches your territory, wherever that is. And I'm learning not to care about wearing a mask, or going to the grocery store without makeup. I just have to get it done, whatever it takes to get on the road to recovery.
Hope you are staying positive. I know it's pretty hard sometimes. It will get better!
Last edited on Mon May 4th, 2009 07:44 am by lois b
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destiny
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Posted: Mon May 4th, 2009 08:43 pm |
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i try to stay positive and i just get so tired sometimes it is hard and the days i feel good of course i over do it to just get it done and not get behind and i am no where needing chemo or sct yet and that scares me .
i wish you a speedy recovery and please stay in touch because i need people like you who understand and are going thru these things to guide me.
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lois b
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Posted: Mon May 4th, 2009 10:36 pm |
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I totally understand the fatigue vs. trying to do too much when you're feeling better thing! I am such a controller that I want everything, and I do mean everything, to be neat and tidy and on time and on schedule. I have a hard time remembering that it is not a crime if you don't vacuum every day, or if you have to sleep all day, and then lie awake half the night because that's how your body wants it. It's a good thing I took time off from work, because if I hadn't, I would have killed myself by now, trying to do everything that my job requires AND keep the household and my social life and my finances and everything else in order. It's easy enough to get depressed, because that's what the disease and the drugs can do to you, and you don't need to have any further reasons to get down on yourself and lose hope.
I found that the chemo was not nearly as bad as I had assumed -- in fact, I made progress so quickly that the doc moved up my transplant date by a full cycle. And the bone building Zometa really helped my skeleton a lot.
I'm under no illusions that the high dose chemo won't be tough -- Melphalan is nothing to sneeze at, but it will mean I'm on the building side, once that transplant takes place. So much of this process is in my head -- meaning anticipation and dread and optimism and courage are all a part of the emotional responses that we endure going through this. When you're feeling even a little under the weather, it's hard to keep the big picture in mind. and if you're not feeling good about the "watch and wait" plan, then talk it over with someone else. Not every doc is going to have the same view of your particular case, and you might find encouragement just having a different perspective.
Hang in there. We've all got a story pulled from the same book.
L
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