And again we agree Dave - glad to see it gone. Have always felt that this group is one of support and assistance, not the negative feelings that we don't have time for.

Go in on Wednesday for my first monthly checkup, and do admit a little nervous about it. Still feel great though, as you said will be the case, am more tired than I used to be. Trying to increase my walking daily, and of course the blueberries. With a little luck I should be able to get my Hickmann removed tomorrow so at last will be able to take a shower without the job of covering it up. Will report back.

Ollie

Good luck Ollie,

You and I are in the same boat, we will both be in Boston on Wednesday. Good luck to you and getting the hickman out is nice. You still have a bandage, but once that is gone, you are home free. If they ever want to put anything else in you, tell them to put in a port. They are under the skin and you can shower, swim, anything with them in.

Don't be nervous, we are all praying for you.

Ollie -- that makes both you and Abby (I think it was) who were getting some more info on Wednesday. I will be praying for both of you. I am just sure all will be well. I am convinced that if something is going wrong you will know it by the way you feel. Probably start with headaches or something. So, keep the faith and don't worry about it.

I had my 3 month check up on Monday -- all is well. I am still lower than normal on platelets and WBCs, but she said forget it -- that's just life for me now. So, no running with scissors or falling off of roofs. OK -- I can live with that.

I think you will be graduating to three month visits before long.

And what are you doing with a hickman? Get rid of it -- it can only cause infections at this point.

Give us a blow by blow on how they get it out -- I will be quite interested. I am not going to tell you what happened to me -- at least not now. Its in my book, but I will tell you after you get yours out. It should be a piece of cake.

Which reminds me -- my wife got me a cup cake today .., see you later. Take care -- dave

Thanks to both Dave and Abby for positive thoughts.

My doctor wanted to keep Hickmann in until past BMT results were in and were negative as they were, so I expect it to be pulled this visit or soon thereafter. Will give you a blow by blow Dave, though there might be some difficulties as I want to keep the Hickmann after they get it out - going to frame it and hang it on the wall.After all, it will be my most expensive piece of art :-) -- cost over 12,000 to put it in. Friend of mine, fellow AMLer, also had BMB a couple of weeks ago and got results today - and he also is in remission after going into relapse a couple of months after his consolidation rounds were over with, went through induction with some difficulties, and made remission. Thank you God! Needed this as also received news that another AML friend passed after successful SCT and making it through Acute GvHD and seemed to be doing well, then . . . .

Back soon -
Ollie

Dave,

Oh the Hickman, I went home on a Hickman right after my SCT and about two nights later the cap ripped out of my skin. It was not good. It hurt a lot. I had to go in and they had to remove it and give me all sorts of antibiotics. So the taking out of the hickman wasn't that bad, although the thing hurt all the time anyway, so I was happy it was out. I would have done anything to get it out. And then they put in a port. I have to have a port because I am stuck every week. Also, I was going back into the hospital at the time and couldn't eat or drink, with my acute GVHD.

Ollie I hope you get good news.

Dave that is awesome that you are still doing really well. I keep up the remission prayers for you.

Ollie, keep up the positive thoughts, it is hard when a friend gets more sick or dies. It also uplifts us when someone gains remission. Hold onto the promises of God and his plans for you.

Ollie -- you just cannot worry about such things -- we are all going to go sometime and we are all in the hands of God. I have an idea we will get some good news from you today (Wednesday) -- I have not seen anything yet. Hope they did not keep you in.

I kind of liked my hickman and it never gave me any pain -- of course, had to be super careful of it. Especially when taking a shower -- had to cover it up with plastic and tape over that. All kinds of things. I guess the reason I like it was that it came after a week of out patient vidaza that was not pleasant at all -- had to have an IV thing strapped to my arm all week. Once you go thru that you will appreciate any kind of a port. After they pulled the hickman I got a PICC. I guess about the same ... seemed like I had to be more careful with it than the hickman though.

Abby -- yes, its that cap that can be nasty -- it resides below the skin and is supposed to keep things from becoming unstable. It usually works pretty good. I will be interested in hearing Ollie's experience when they take it out. Do you still have a port?

Take care all -- let's say another prayer for Ollie. -- dave

Thanks to all for your positive wishes. They all worked as labs were great, up to six week visit with Doctor, and had Hickmann removed. Only bad side to an excellent day is didn't get out of Dana Farber until 5:45pm so got nailed in traffic.

Dave - I loved my Hickmann. Had it early in treatment, day 3 in Hospital before any serious IV therapy. Over the past 7 months, I had become very attached to it. Got where I was able to sleep through the 3AM lab draws and some of the changes of the IV bags. Only other downside to having it removed is I finally reached the point where I was able to do a good and quick job covering it up for showers. My wife became an expert at flushing it out, and doing that chore also provided some quiet time for relaxed conversations.

Had a little problem getting it out. Wouldn't come out easily so had to have some lido and cutting of the scar tissue that had grown around it. Didn't allow me to keep it, darn it. Claimed it was biohaz - what the heck, it was in me so what is wrong with keeping it. Didn't win that argument either. Was going to take it out of the trash however a nurse came into the cubical just when I was going to do it so strike that plan. Worse pain was getting the lidocaine shot. The charge nurse brought my wife down and let me know all the things I couldn't do for a couple of days, then what I could do.Wash dishes, clean the shower, scrub the floors, vacuum. Boy, those women do keep together. Couldn't get out of there fast enough.

Thanks for the prayers. Getting the Hickmann out was the final act to let me know I am in remission now. Now to make good use of the time God has provided me.

Ollie

Ollie- so happy to hear that your visit went so well. glad they got the hickman out, even if they did have some trouble with it. Also, amazing that you get to go to 6 week visits that is remission. I understand about hitting the traffic. I have to go down the Mass Pike to get home from Mass General and if I leave at rush hour forget it. It will take forever.

Dave: I have a port, that is under my skin and the nurse accesses it when I go to clinic, they put a needle in it and they can draw blood and give me iv meds without having to put in an iv. I went through 3 PICC lines during induction, and my Hickman during transplant had lots of issues they almost pulled a couple times. So for me the port is great, no infection, no covering it to shower, nothing. Its great and can stay in for years.

I am so excited to hear all this good news. It is encouraging.

Addy Just wondering what the name of your port is so I can research it. Sounds like a great alternative for those who have trouble with Hickmanns and PICC ports. Friend of mine has that problem.

Have a good Forth everyone.

Ollie

So glad to hear the good news, Ollie! =)

Ollie -- YES -- GREAT to hear that all is well. I knew it would be -- you are a survivor. Now, stop worrying about it and get on with life!

Abby -- yes, please tell us what kind of port you have. Does it at all hurt when the have to connect to it.

As far as recommending anything, I would recommend what that clinic or hospital is best at -- I am sure they all have their pros and cons.

OK -- now that Ollie has shed his hickman I can give you the short version of the day I got mine out -- the nurse practitioner had done a lot of these before and said it would be no problem. So she pulls and it just will not come out. She pulls harder and finally it breaks. Same problem that Ollie had -- the flesh had grown around that button or whatever it is under the skin and it just would not let go. So the np says -- Oh, that never happened before. I don't know what is going on ... after all, this thing IS stuck in a major artery someplace, so I yell -- "get the surgeons!!!" I figured the guys who put it in should be able to handle it. Well, that is what she did stat, and they fixed me up. It took a little while and one of them asks if he can just leave the button (or whatever they call it) in. I said it was his call whatever he thought best. Then he decided it would be best to get it out. It was their stopping the bleeding that was the worst part of it -- they had to use quite a bit of pressure for quite a while. My daughter was in there watching and we can joke about it now. I would just recommend if you are having a hickman out that there be some surgeons on call. It is only a very low chance that anything like this can happen, but just in case it does. I did not want to tell this story before Ollie went to have his out ... more than he needed to know. And, his was fairly routine. I would get another hickman in a second if that is what they recommended, but when they were to remove it I would let them know what happened before and be sure to have a surgeon handy, although if I have a choice between a surgeon and a nurse-prac to work on me, I will take the nurse-prac every time,

This might help someone -- I hope it does not scare anyone ... these things happen, but they are rare.

Its time to give thanks to the Lord for Ollie's good news -- dave

Glad you held off on telling your story Dave. I didn't need to know that. My PA,while informing about the procedure, did mention that on rare occasions the tube can break off within the vain and that would require going into artery in leg and fishing it out. However, that complication is rare and these folks are trained not to use too much pressure when pulling. The bit of discomfort was well worth having that port in place over the past seven months.

Also getting on with rest of my life. Got a copy of the pathology report on my last BMB, and one sentence was all I needed - "Diagnostic features of involvement by acute myeloid leukemia are not seen." Those few words are like having a jail door opened. Thanks to all for your support and prayers.

Ollie

Ollie: Yes, I held off since you were about to go thru it -- like I said, I would have gotten another one in a second because I believe what happened was just a quirk. I think I would prefer the hickman over a PICC, having had both of them -- it seemed I had to be a whole lot more careful of the PICC -- perhaps because it was in my upper arm. I have seen the other ports under the skin but for some reason they did not recommend that for me. Abby can tell us for sure, but I thought there was some minor pain when they actually stick the skin to use it.

Yes, I know how you feel about the BMB results -- in my case my onc pointed to the upper right hand corner of the report where it said "Normal" -- he said that was the bottom line. Great feeling. My new onc last Monday said that as long as the blood numbers are OK and there are no blasts found in the blood. It they did find something or if I started having other symptoms then they would do another BMB, but no need for it now.

Life is great -- enjoy!!! Prayers for all of you who are striving to get into the survival mode -- keep the faith ... it will happen. -- dave

So, having had all 3, a PICC (actually 3 of them), a hickman, and now a port, I recommend the port. It is all internal and you don't have to do anything. Now yes they do stick you when they access your port. They take a iv tube with lumens (the part that hooks up to the iv tubes) it has a little needle on the end and they stick it in. They can leave it accessed if you need to and you treat it like a hickman, covering it up when showering. Then when you don't need access all the time, like me, only going to clinic once a week, I don't have anything external to worry about during the week. I don't have to worry about covering it, or it getting infected, or if my daughter hits it on accident. So for me its the best option for right now, they can keep it in and just use it when they need too, which is good for those of us who only go to clinic once a week or once every two or three weeks.

As for the kind of port. Its a Port-a-Cath, single lumen, I think that it is plastic or a plastic polymer, not titanium. Its like a circle disk under my skin that they stick a needle into. It really is only a little prick.

Abby -- yes, that that does sound like the best way to go. But maybe before too long you can get rid of that as well. I have to admit, you probably would not want to get rid of it, but once you get down to only going in for a blood check once every three months, you will not need it any longer, and if the unthinkable does happen, you could always get another one installed ... but that's not going to happen.

Great to hear from you -- and to everyone -- have a GREAT 4th of July. -- dave
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