Sorry that I've not been around lately. I've just been really busy. I haven't read all the posts on this thread, but as Tex said, I do have lung issues and have discussed lung transplant with my pulmonologist. He is on the staff at Fred Hutchinson so is very familiar with transplant-related issues. His thought on transplant was that it was a treatment option of last resort. The track record on success with lung transplant for lung gvhd is very poor and the mortality rate is staggering. Hopefully that will improve over the next few years. Also, one has to be at least 5 years post-transplant to even be put on the list. There are age issues also. At 62, I would only be eligible for 1 lung. Younger folks are eligible for both lungs. At some age point, they don't do them at all. I don't know about the insurance issues as I never got close enough to have to research it. I'm just opting to stay as fit as possible, being aggressive in treating upper respiratory problems, and staying away from sick folks and crowded, enclosed places as much as possible. So far, so good. I think my fingers are permanently fused in the crossed position after dealing with AML/transplant-related issues for the past 5.6 years.
I wonder why you have to be 5 years post transplant to be considered. Seems like an awful long time when the untoward effects of chemo/radiation/transplant can effect you alot sooner whatever organ transplant you may need. The lung transplant for gvhd does puzzle me though, as i can understand how a lung transplant could be effective for chemo related lung injuries but what are the chances of the gvhd attacking the new lungs? I really don't know and does the transplantation reduce the chances or that occurring? Hmmmm.
Good to hear from you Lee. Wishing you the best and a safe and wonderful holiday season.
I don't know why they set the standard at 5 years, most probably because then you're considered cancer free?? I know that the donor waiting list here as everywhere else far exceeds the availability of useable organs and that if one is in a high risk group of relapsing, they probably want to prioritise people that they consider to have a better chance of the operation and post op traumas. As mentioned, the mortality rates are scary reading, but as my beautiful and wise sister repeatedly told me, there's no such thing as a 90% survival rate. It's either 0 or 100. For me this is the only way to think of things, otherwise I'm sure I would have lost my will or mind underway.
I asked about the recurrence of cGVHD attacking the lungs again and was told that if they thought that there was a probability of this happing again, that they wouldn't even have have me in for evaluation. That was reassuring news. When first dx with lung rejection, I was down to a 21% lung capacity, in spite of the fact that I had check ups twice a week it still went undetected. 3 weeks later it was 16. I have no idea of what it was before being transplanted. Knowing the number wouldn't have helped , but would have added more anxiety to another wise pretty anxious situation. And they told me that one of the worst things to accelerate the deterioration was/is stress.
On another note, does anyone with GVHD have trouble with terrible cramps? Feet, legs, hands and just recently both sides of my waists??? And does anyone have any helpful hints? Thanks Tex, i tried the compression stockings and they really helped
Went to my first Xmas party in 3 years last night. It was great . Lovely feeling to feel somewhat normal again.
So glad to hear you are doing well soldol. My son also experienced cramping but it was of his legs. I have heard others having it in the hands also but can't recall the waist. I think i would bring that up to the doc just to make sure it is nothing else. Neurontin can sometimes he helpful. Could it be gvhd?
And thank your for your response regarding recurrence of gvhd. Glad to hear your doc doesn't think it will reoccur and i certainly hope that is the case. I am actually very blind to lung gvhd.
I'll check in with my doc, actually feel to the floor last week with one in my side. Thought I'd check here first as I've said before, the well of knowledge on this forum is overwelming and like finding the pot of gold at the end of the rainbow. And it helps to have a theory or lots of questions (think tank theory) when trying to figure out what's going on.
Enjoy your sunday.
sorry for hasseling you again , but I was wondering about the Neurotin and why it's used? Is it because it's an antiepileptic drug? I'm an epilectic as well, so I've been on meds for this for over 20 years, Rivotril for the last couple of years,(Scarring of the brain due to a couple of brain surgerys as a kid. I truely am the woman with a 1000 lives That was definately the worst I've been through physically, but it taught me at a young age never to take any day for granted and not to sweat the small things in life).
I'm guessing that the cramping is GVHD related as everything else seems to stem from this. Rotten thing! How is your sons GVHD?
I actually have quite a problem with cramps, legs, toes, groin and hands predominately. I have been on a medication called Flexiril for several years, before and after AML, and it manages the cramps pretty well. Also in America there is a homoepathic remedy, made under the Hyland label, called Leg Cramps. I put 1-3 pellets under your tongue and they melt away. It has also helped me in the past. I get it at a Health Food Store or online. Maybe one of these can help you.
Thanks for your reply. Taking notes as to share with my doctor, so keep them coming .Just wondering, I was just now reading about prednisolen and muscle cramps. Are or were you on prednisolon when you had cramps? (Sorry if i'm asking for too much personal information here, it's just really refreshing when someone understands what you're going through so if I'm crossong the line don't feel obliged to answer )
My son had really bad neuropathy in his toes. You could not touch his toes, he had problems wearing any type of shoe and slippers and sandals would just fall off. He also could not migrate steps as he could not put any pressure on the toes so he would side step down or hop flat footed. He also had cramping but i honestly did not correlate the cramping in his legs to gvhd. He was placed on neurontin and he improved drastically within a week. I think he was on it for a couple of months but is no longer on it and is fine. Whether it had any effect on the cramps, i really don't know because i did not tie the two together and can't remember in retrospect, if the cramps were worse during the toe neuropathy. I know of others that neurontin did not work and they had to go to lyrica.
I mentioned neurontin because a friend of mine, post auto transplant, was having so much leg cramping that it would interfere with driving and wake her about 5 times a night. She was placed on neurontin by her neurologist and said that she sleeps much better and only awakens about once a night now with cramps. Her cramping is believed to be related to neuropathy.
Although neuropathy can cause cramping so can gvhd, so your doc really needs to evaluate it, make sure you let him know of the side "cramping". Is the side cramping in one side or both? Just curious because my son had kidney stones that dropped him to his knees, too.
I believe prednisone can cause cramping as well. Maybe that is the culprit??
Did not know who to respond to but I have had cramping in the legs, toes, hands pretty much every day and strange pain that I can not explain. Found you don't stretch when you wake up in the morning. I make sure my potassium is up to where it’s suppose to be and drink plenty of fluids. If I don't drink enough my eyes are worse and my muscles cramp more. I'm 6 years out from stem cell transplant and soon be 60 years old. My doctor does not use m1,m2 but said he thinks I was m2 when I asked. I don't get on the computer much so I cannot respond much. I like reading what every one has to say and can associate to most of it. The nerve damage in the legs and feet gets better but I have not seen it leave completely. I pray that some day no one will have to experience cancer of any kind. AML Survivor Tom
That's interesting and could explain the side cramps, as they've just recently shown up. I know that I have some degree of passing kidney failure and have to drink 3 L of water a day. Which isn't great either, as it does dilute meds and I do recall someone saying something about low potassium, but I didn't really know what to do with that information, so it kind of went into 'storage' for one of those A-ha moments.
The leg and hand cramping wakes me up howling and there's no forthwarning that it's coming. It can be pretty embarresing at times. So if i could get that under some kind of control, that would be brilliant.
I had nightly cramps in my shins, yes, my shins when I was just out of the hospital following my SCT. I still have them, though not every night. I also have them in my hands a lot.
I just try to eat a banana every day, stay hydrated and keep my trace minerals and such up. Even then, I still cramp up but not as much and it seems to pass more quickly most often.
congrats on your sixth year. I'm right behind you.
6 years on and you still get them? I think it's time to push the dream of things being back to normal within 2 years back a bit. Have blood work tomorrow morning and have been eating bananas all day just to see if it makes a differnce. A little self experiment
For the first time in ages, I've had a good eye day (relatively speaking, meaning that I've been able to be on the go all day without wanting to rip them out of my head.) Strike good day, BRILLIANT day! Knocking on wood that it might be the first of a couple. I'd love to go back to school next year, but between the cramps and the eyes, I'm starting to wonder if I could do it.
How is it for others out there? Are a lot of you back at work and such? And is fatigue still a problem?
Thanks for the great feedback here
Hi Soldol, I was just wondering, since you say you are drinking a lot of water each day because of your kidneys, if you could try substituting gatorade or a similar product for some of the water...there is a low-carb version called "G2" if you have any issues with diabetes or keeping blood sugar stabilized. What I was wondering is if the electrolites in a sports drink might help with the cramping, since many of the electrolites are involved in muscle contraction. Might be worth a try. I know I got in trouble at one point during my induction treatment because I was drinking too much water and causing my electrolite balance to be all messed up. (which just goes to show that I can get in trouble over almost anything) Anyway, I started drinking one gatorade per each nurses shift in place of some of the water, my bloodwork improved, and I wasn't in trouble any longer.