Phil,

We've got your back!

Keep your eyes on the prize.

Cliff

Happy Birthday Phil -- I managed to get out for my birthday but than got a fever and had to get back in. Don't do like me -- make sure you don't touch anything that is not totally sterile. Got a PICC? That will make life easier -- make sure they clean it out (can't remember what that stuff is that they back wash it with, but its good to do it every other day or so. You probably had one before so don't need my advice on that. Please keep us up on things -- dave

Hi Phil,
Happy Birthday! Sending prayers your way that all goes well. I also used the incentive spirometer while I was incarcerated, it really helped me focus on taking long slow deep breaths. Just ask the nurses to show you how to use it.
Take Care,
Suzanne

Sorry i havent been on in awhile.. the server at the hospital for some reason blocks me from getting on unless i use my cell phone. I made it thru last week with no real issues :). Im dealing with a lil bit of "thrush" but thankfully thats about it. I got home Monday and i went to see the Onc today and they checked my CBC and everything is looking good. Ofcourse.. im dealing with the dry eye syndrome thing again in both eyes this time :(... hopefully itll clear up soon.

Update on transplant... i spoke to the coordinator and there suppose to get final test results from the donor this week and if that checks out she is going to request the go ahead and hopefully ill be in for my transplant on the 10th of december. I have to go on the 28th for a bone marrow biopsy, back on the 5th for a consult with the transplant doctor.

They are still asking me to participate in the clinical trial with the low dose treatment, im still not decided on what to do. Ofcourse the docs are trying to lean me that way in my opinion but i dont want the cancer to come back a year from now and i regret the decision. Im gonna pray on it and hopefully God will help me with this one.

I hope and pray EVERYONE is doing well and i miss hearing from everyone... Phil

Ohhhhh THANK YOU... for the Birthday wishes !!!! The nurses kinda made me a cake it was very nice of them :)

Phil,
Glad to hear from you and that things are going according to plan. I hope you can get through your decision-making process about the low v. high dose chemo.

Things are moving right along for you. I couldn't be happier for you.

Keep going strong.

Yeah, I second Cliff's advice about getting the eye drops. I had steroid eye drops while I got chemo. But after I relapsed and as part of the transplant proces, the docs started me on restasis (anti-inflammatory)eye drops (which I'm still on) since GVHD can settle in the eyes and the dryness can cause problems.

Again, good to hear from you.

Therese

Phil,

Now that Ollie is back in the fold, I was worrying about you. No longer! Sounds like things are going well. Use the artificial tears constantly. I only got prednisone drops when I was getting cytoxan before transplant. The restasis is actually cyclosporin eye drops. Cyclosporin is often used in GVHD and is an immunosuppressant. Your doctors have to make that call.

I don't know what to suggest for you as far as your conditioning, so I will try to keep my nose out of your doctors' business. One thing to mention....I am in the midst of a 24 hour urine collection, because my renal tests have risen. Frankly, I think it is dehydration (because of the ratio of BUN to creatinine). Anyway, I went against my better judgment (remember Alice in Wonderland..."I give myself some very good advice, but I very seldom follow it"), and read about kidney disease and total body irradiation. Apparently the incidence of some kidney damage is about 50%. I wouldn't have looked if my doctor hadn't made me an appointment with a nephrologist without telling me anything. I am not a happy camper. So why did I mention this? You have to ask your doctor to lay the cards out on the table about the treatment alternatives. Perhaps even with the knowledge that radiation can hurt the kidneys, I would have made the decision to proceed. Perhaps not. Even doctors don't always get the straight story. I have learned a lesson. ASK, ASK, ASK. Then use the mind that God gave you and make a considered decision.

I cannot tell you Phil how nice it is to hear from you and Ollie today. I have a huge smile on my face.

Cliff

Yes, good to hear from Phil and Ollie. Would like to know more about Ollie's issues. Hope he gets some more answers tomorrow at the clinic.

Cliff,
Keep us posted on your kidneys. When are you seeing the nephrologist? Can't say as I'm glad to hear about that statistic, either, but we know about aggregate statistics and individual cases--they don't match up. Your story about the young guy with testicular cancer is apropos.

As you have so wisely cautioned others so many times in the past, I will take your advice and not get too anxious too soon. Best to wait to find out what is going on, and well want to know as soon as you do. We are just that way--not nosey to be nosey but just nosey because we are concerned. What is a 24 hour urine collection exactly?

Therese

Phil,
Great to hear from you. My eyes are really uncomfortable right now and I am using the steroid Dexamethosone drops and some moisturizing drops. Helps it feel much better but must remember to use them, suddenly I am doing something my eyes are hurting and I had forgot. Maybe some chemo brain. I do not know what to tell you about the trial other than listen then go with what you feel most comfortable with. Congratulation on moving forward on your transplant date and going home!

Cliff~ Praying that all goes well with the Nephrologist. Try not to worry but I know that is hard, much easier said then done. I know, I tend to scrutinize my labs too much myself. Hugs, to you and your family.

Take Care,
Suzanne

Suzanne and Therese,

I see the nephrologist on Wednesday. In fact, his office called about 15 minutes ago to confirm. I don't think I have a major problem.

Nevertheless, I am still riding high after seeing the posts by all of you. We are all moving along in some capacity and that makes me happy.

I brought coffee and cake to my wife this morning and about an hour later she was vomiting. Now I am afraid to go near her (I have no immunity against viruses!).

As Gilda Radner would say on Saturday Night Live, "It's always something!"

Be good guys,

Cliff

Love that you quoted the great Gilda Radner! Make sure to wear a mask Cliff. Be really safe if you feel anything at all. Always better to be as safe as possible. I checked into the Hospital at one point to stay away from my fiance who had a cold.

Yes Eddie (BTW, glad you are back)

I am paranoid about getting a cold, but I have only had one in 14 months post transplant. I wouldn't go so far as to check into the hospital, because I have already learned how to avoid getting infected with viruses and am careful.

Gilda was my patient. I loved her and she had the kindest soul. What a loss.

Cliff

I worry about colds. Is there anything we can do? My daughter gets allergies throughout the year that can sometimes manifest in sinus infections. She does not live here, but visits, helps me cook and does wash here once per week. Should I just wear a mask when she comes. She had a fever of 99.3 the other day and her doc put her on meds for possible sinus infection, but I do worry.
Suggestions?

Andrea

ThNks for the advice and kind words everyone :). This dry eye thing is NO FUN. I was trying to put drops in my eye that hurts the worst and ofcourse i poke myself LOL. OMG that hurt like no other. I guess my depth perception is off. Each day that goes by my eyes get just a little better.

Im probably gonna stick with whats proven and go with the high dose, i dont want to relapse and look back and wish i would have. I would love to help out cancer research, but, this decision couls cost me dearly. Its kind of a tough spot to be in, the transplant doc im sure wants me to do it and if i say no, then what?

Andrea,... mask and gloves if you think anyone is sick around you and disinfect everything!

Phil,
Glad your eyes are feeling better, do not forget the drops like I do! As to you MD, it is OK to say no and he should not push you to enter a trial, I think he will understand your perspective.

Cliff~ Gilda was lucky to have you as her MD. I read her autobiography a while ago and loved it. Such courage and strength. I think I will have to place a hold on it again at the library! Stay well and be sure to wash those hands! :)

Take Care,
Suzanne