Boris,
Congratulations on your transplant, and welcome to our group! My transplant was 1/22/13! I have used a lubricating eye drop for dry eyes, if the over the counter one does not work. I would see your opthamologist. I do not have dry mouth but I do remember my Dentist mentioning some products I could use for dry mouth. My mom chews biotene gum for dry mouth ( she has not had a transplant ) and she says it works well for her. Does your transplant center have someone you can call for longterm follow up issues? They are pretty good at addressing these issues for you, I call mine fairly frequently and they usually get back to me in a day or two. Hopefully some of these suggestions will help and congrats again on kicking AML to the curb!
Take Care,
Suzanne

Boris,

I had some dry mouth and eyes during Month 4 to Month 8 post transplant. They were worst when immunosuppressants were at high dose but they gradually went away when the medications were tapering off. I'm now 14 months post transplant. Still on 0.5mg tacrolimus daily and 500 mg Celcept daily, but do not have no any of those symptoms. Regarding food, my problem was 'can't taste food', which is different from swallowing. Maybe you can try various types of soup and healthy smoothies (with nuts, vegetables, yogurt, fruit, etc.) Hope this helps.

Hang in there. You will get through this soon.

Violet

Boris,
I posted on the Team transplant post as well.
I use the Biotene products for dry mouth. The mouth rinse and gel work quite well.
I ate a lot of applesauce initially, sweet potatoes and chicken, despite what I call, my hospital or medication acquired diabetes.
In terms of dry eyes, I too had an ophthalmologist prescribe a steroid eye drop that work perfectly called prednisolone acetate ophthalmic suspension it was first prescribed during my induction chemo, but was ok'd for use post transplant as well. It is thicker, caused some blurriness from the thickness initially, but helped with the dryness. I also had horribly dry sinuses and use deep sea premium saline for that.
I vaguely remember having an olive oil type substance that I was prescribed directly after transplant for ease of eating, but i completely forget what it was called now.Being Italian, I tried to pretend everything was olive oil.
Hopefully, some other people will have better food suggestions for you. That was and still often is the hardest part for me. Either it tastes funny to me, I have a hard time swallowing (still), or get over full. I Still cannot eat an entire burger or whole piece of any type of meat or food. I did eat quite a bit of oatmeal (cinnamon flavored) and cream of wheat. I also switched to a smaller dish since I was feeling bad about it all the time. I had to adjust to the glucose issues since they were so new to me, but that's gone now that I am weaned off immunosuppressants.

Best to you.
Andrea

Boris

Post transplant I found the dry mouth one of the hardest things to cope with. I found chewing sugar free gum during the day the most helpful. I ate porridge (oats) for breakfast. Drank copious amounts of water. Used Biotene products as the lack of saliva means bacteria has an easier time invading the teeth and gums. I ate a lot of salad and meats with sauces or gravies to help. Lunch was probably the hardest but a sandwich with salad and a mayonnaise I could usually chew ok with the help of a drink. It does eventually ease and start to get better.

Nicole

Boris,

One option instead of Boost is Protein shakes that are lactose and sugar free. The are whey protein isolate and come in many many flavors. I drink a double scoop everyday for 50 grams of protein. BTW, I am not post BMT but rather half way through chemo only consolidation. If you are interested in trying shakes and do not want to purchase a large container before you are sure you can tolerate it, I recommend the following website:

http://www.nashuanutrition.com/store/protein-powders/protein-powder-samples-1-serving.html

You can purchase sample scoops of several brands for about $1.50 per. Some I highly recommend are Isopure chocolate and Syntex Nectar-Fuzzy Navel (very yummy). I mix them in a shaker bottle with ice and water so they are not thick at all.

To purchase full size containers, I recommend Vitacost.com. Free shipping if you spend over $40 and the best price I have found. Whatever you do, don't purchase protein shakes from Walmart, Walgreens ect-they have poor quality protein that does not absorb as easily.

Hope this helps!

Blessings,

Julie

Hi. Thank you all for your responses.
Unfortunately my problems are more severe. I visit with BMT docs once a week. They are trying to help, but not succeeding. I also see an ophthalmologist quite often. He put in collagen plugs in my drain ducts. I used prednisolone eye drops as well. Not much improvement. I could get scleral contact lenses, but those are pricey and am not sure the insurance will cover it. I'll probably get moisture chamber glasses - though ugly, they could be useful.

For dry mouth I've tried various products including Biotone rinse and toothpaste. Nothing helped so far. I'm hoping that things will improve a bit when immunosuppressant dose is lowered. I'm currently treated with photopheresis. It could over time help me with lowering dosage of Tacrolimus and calming of GVHD.
As far as food, I eat soups a lot, make my own smoothies and occasionally eat a small sandwich with lots of water. Used to eat energy bars but those have too much sugar and carbs. Now I'm looking for more options, as there is a possibility that I might go back to work, at least part time. My company will terminate my position if I'm not back by Sept 9th. It is a such a good job for me. Not financially as much, but the type of work and people. I really wanna keep it. It is not physically as demanding and my oncs recommended to give it a try. It would help mentally. So I'm planning my nutrition in work environment. We have a cafeteria, but choices of food are not that great. They'll make you a custom salad, but that tends to be too "sticky" for me.

Thanks again for ideas.
Only best to you all
Boris

Boris,

I wrote a long reply to your post but probably inadvertently didn't send it. I am 2 years out from T-cell depleted transplant. Because my transplant involved removing the cells that cause GVHD from the infused stem cells, I never got GVHD and have never been on Tacrolimus, Sirolumus, or Prednisone. The flip side is that my T-cell defense against viruses, fungi, and residual tumor cells is diminished. Nevertheless, I have done very well.

I received total body irradiation and that plus the horrid chemotherapy gave me an incredibly dry mouth and severe alteration of my sense of taste. The latter lasted at least 6 months and really made eating everything but pasta, grapefruit and egg very unpleasant. That has completely resolved. My mouth is also much better, albeit still on the dry side. My eyes have always been dry and the treatment probably worsened that subtly. Occasionally I use saline drops, but that is not often.

I think all of this will get better as your GVHD issues abate, and they will. Just hang on and you will see what I mean.

I am glad you are with us.

Cliff

Hello, Boris. I have very little to add to what others have said, but if the problem with food is partly blood sugar, you might try the Glucerna supplements. I personally don't like them because they seem so sweet (though the sugar is artificial). Of all the easy smoothie/shake mean supplements I have tried, the Carnation Instant Breakfast seem the most palatable. The whole issue of taste and dry mouth does get better, but it may take a long time.

Shoshone