Phil: My eye drops comment was for you -- not sure why I put Cliff's name on is. I agree with Cliff -- you need to go with what you feel most comfortable is going to solve your problem. One of the most important aspects of your treatment is tha tyou feel confident about it. Take care -- dave

Cliff:

Thanks so much for doing an analysis -- I will let you know where to send the bill. ;o)

The only thing that alarmed my onc a couple tests ago was the large RBC diameter, and they tested me for B12 and found that there was no problem there, so did not put me on extra B12. They said that would be a nice solution, but that was not the problem. They speculate that my system is just all messed up because of the chemo and they are not inclined to tinker with it. Perhaps that is largely because I am not inclined to want them to tinker with it. Every solution creates another problem. I feel good I am on nothing by synthroid, which has nothing to do with my AML/MDS.

I feel like I have taken advantage of you and am kind of embarrased. All I can say is that you are a great friend and a tremendous blessing to everyone on this forum. Thanks so much -- dave

Dave,

Of all people to feel that you have taken advantage of me! You have taught me more about so many things that the little that I can offer pales in comparison. Being able to use my medical knowledge to help others is therapeutic for me, since my immunity is not good enough yet to return to work. I love my work. It is like breathing. Absolutely required for me to live!

Since your B12 is normal, it was appropriate not to supplement you. Even if your folic acid level is normal, there is no harm in having extra folate, either by pill or diet (green vegetables). What ever you can't use will come out in the urine, since B vitamins are water soluble.

Don't rock the boat. You are doing well.

Dave, although this may be a bit of the "mutual admiration society," but your presence on this site has opened my eyes to God and other things that I had never thought of before. God bless you and your high MCV.

Cliff

Cliff -- I appreciate your kind words. On behalf of everyone here, I know we all appreciate having you on this list, and your medical abilities are just icing on the cake.. Thanks for all that you do -- dave

Dave,

Let's make a pact to channel our mutual appreciation into prayers for those on this website who are still at the beginning of the tunnel. Those of us who have gone through all of this can be a beacon that lights the way.
Je suis accro ce site Web (I am addicted to this website) and it is a habit that I never want to kick. My prayer is that as we all get healthier, we will talk more and more about God, books, friends, and families.

Je prie pour le jour o cela se produit.

Cliff

Spent the night at the ER... yeahhh.. my darn picc line developed a clot luckily superficial. They took the picc line out. Im heading over to see the ONC now and i guess go from there. Im hopeing to hear from the transplant soon.

Sorry to sound negative Cliff... its just been one of those weeks i guess. As dave mentioned... Cliff i hope you know how much you are appreciated on this site, it really means a lot to everyone being able to get a physcians opinion and dont get me wrong i appreciate everyone else's opinions just as much. Hope everyone has a blessed day !! Phil

Cliff: Totally agree ... I cannot prove it but I am convinced that prayer (of other good people more than my own) helped me as much as anything/everything else. While I do not believe it is appropriate to bring religion discussions onto this list, we do have the desire to help the participants in every way possible to beat this AML thing, and prayer and dependence on our Creator is certainly a part of that.

Phil -- ugh -- bad news. Losing your port is a major thing. Hopefully you can get another one before long. I had a Hickman before my PICC and liked it much better ... was not as fragile. There is another type of port I understand that sits below the skin and while that has always sounded a bit iffy to me, those who have had them that I have heard from have all said that they love it. My opinion is to get what your med team recommends because that is what they are used to.

Another lesson here -- there is a solution that needs to be applied I think about once every other day to flush out the lines. I would opt to do this more often rather than less often. It depends if you are in or out patient as to who does this. If in, ask the nurse to do it more often. If out, then you will need to do it yourself, or perhaps whenever you go in for a check get them to do it for you. I forget the name of that solution right now ... if anyone knows it, please help me out here. I would expect things could get clogged even with this flushing out, but it would reduce the chances. -- dave

Dave,

What can I say? Nothing, because you already know how you have helped me.

Phil,
I am always hesitant to put in my two cents, because, as a physician, I hate when people put their two cents into interpreting what I am doing. However, since we are all friends here...right?....I will just say this.

From what I have heard and seen with PICC lines, they are bound to ultimately clot, get pulled out, get infected etc. I had an INTERNAL JUGULAR Hickman line placed. I agree with Dave, it gave me no troubles as all and was ultimately removed when I got a beacteremia due to mouth bacteria. It never clotted and it was fine. I got local anesthetic only to have it inserted. Is a Hickman a possibility at all? It was easy to shower with it, because they make these adhering plastic shields that protect the site.

I am not certain what solution Dave is referring to, but generally the indwelling lines are flushed with a heparin solution to dissolve any clots that may form.

As they guy I always quote (a 13 year survivor of AML) always says to me..."Don't sweat the small stuff, because it is all small stuff."

Be strong Phil.

Cliff

Phil and Cliff:

Yes, again Cliff got it right -- it was heparin. Get your heparin backflush early and often whether you think you need it or not -- for both PICC and Hickman lines. I will not say that the Hickman is perfect, but will not go into that detail now -- it is in my complete story if anyone is interested. All I will say is thatit was much better than the PICC ... neither gave me any major pain, but the Hickman just felt like it was more durable, less fragile. They made my lines quite long, hanging below my waste, so I made a holster for the two lines. I was the quickest draw at UAB! ;o)))

Get whatever they want to give you -- anything is better than nothing. -- dave

I flushed my picc daily, for some reason as soon as i come home with a picc it always seems to clot. I think they should have pulled it when i was discharged. Im sure they will put a port in for my transplant, i know my arms are about wore out from these picc's. One the good note, my eyes are about back to normal :).

My ONC seen me today and my counts are low and he said they should start coming back up this week, ive been without chemo for a week today it took about 10 days for my numbers to rebound. I have to go get my CBC's checked again next monday. I was wearing a mask and gloves and he acted shocked i was and basically said dont worry about it but with my numbers low im not taking any chances. Ive learned my lesson.. phil

Phil,

You are one good patient! I hope they put in a Hickman for your transplant. I had absolutely no problems with it. Keep moving around to maintain your stamina, strength, and muscle tone. If you have to wear a mask, wear one. If you go walking in an area where there are no people, you can go with out a mask and gloves.

Keep healthy.

Cliff

LOL cliff.. Just like everyone else im trying to survive. I told my ONC, you tell me what to do and ill do it and i expect 110% from you as well. Thankfully and with Gods help things have been going good so far.

Thats one thing thats concerned me, is my loss of muscle. Its amazing how this chemo and i guess lack of exercise can do it to ya. Ive always been kinda muscular and my legs and arms have lost so much. Ive been eating like a horse with a feed bag trying to get my weight back up before transplant but my muscle is going south. I guess once transplant is over i can start working on it again.

Phil,

That is the amazing thing. When I got the treatments, I lost everything. In fact, because I was so sick with the first induction, I could hardly walk up a flight of stairs (now I run!!!!). My arms and legs were like toothpicks and my rear end was like an Auschwitz victim. I was better than that before my transplant, because I made it my business to walk as much as possible. One day my daughter and I did 10 miles. (I already told you the story how the day after I got out of the hospital, I walked with a mask and gloves for 30 city blocks - not smart). The thing is. my arms, although not what they were when I was lifting weights, are now filled out with muscle as are my legs. It is like your body remembers the "old you" and returns to that state. Except for the fact that my belly has grown because of my insatiable eating, you would never say that I do not have any muscle. The same will happen to you, so don't sweat it. Just keep walking. Ask them to send a physical therapist to set up a step up exercise (you know, you go up and down on a step). That will keep your quadriceps strong.

Let's face it, Phil. The preparation for transplant is awful, but even when my hemoglobin was 7 and I couldn't leave my room because of no white cells, I still walked around in my room and did exercise. I was no where near as weak after my transplant as I was after my first induction, that landed me in the ICU.

If you are going to get radiation, make sure they give you palifermin to protect your mouth from sores, and don't be surprised if you get TPN (fed by vein) for a while, With a nice transplant, it will be exciting as your white cells go from zero to a good number, Exciting to watch and exciting to know that you will be sprung from that joint soon.

Let me know the day you are being "reborn," so I can say some special prayers. By the way, if you are waiting for the transplant to be something monumental (or painful), guess again. It is a big nothing, but it would be nice to have someone that you love holding your hand when you get it. It is a new lease on life.

Cliff

PS. ask your doctor if they ever do T-depleted transplants. I am curious. Some think that there is more risk of recurrence, but the people at Sloan Kettering do not. Also, there is NO GVHD. That is what has made it so wonderful (if the word wonderful can ever be applied to what we are all going through). I pray for you daily. You are such a good sport!!! And, I have to say, you can be very funny at times.

Cliff,

The tentative date for my transplant is Dec.10th, im hopeing to hear from the transplant coordinator this week. There waiting on the final test results from the donor and she said if that checks out then shes going to request the donor to supply the stem cells and finalize my transplant date. Ill ask about the T-cell thing, they havent said anything about me getting any radiation as far as i know ill ask about that too.

Its kind of a bummer to probably be in the hospital for christmas but like i told my wife id rather miss this one christmas than miss many more. Im looking at it as a blessing from God and my special christmas present :)

Phil,
I was a bit disappointed to miss various holidays and celebrations, too. However, like you, I realized that there will be many more.
Thanks for keeping up updated on the timeline for transplant. We are all in your corner.
Therese