Dids -- great to have you aboard and thanks for the info and advice. I doubt I could play but maybe ten points of tennis -- so you sound like you are doing fine -- don't over do it -- quit as soon as you start feeling light headed -- don't try to push it -- conditioning like an athlete is a thing of the past -- just push the envelope a little and keep yourself fit. Please keep us up on you progress toward a transplant -- you might want to jump on some of the other threads in that regard.

Showering with a PICC or a Hickman -- I had both -- liked the Hickman so much better ... seemed much more secure, not as fragile. The trick is to tape a plastic bag around the entry point. It took me a few days of trial and much error to get it, but once you do it will not be to back (or in Myra's case for David). The nurse did it the first couple times, but I found I could do it better. It is kind of tricky with one hand, but you can learn anything if you practice enough. Once you get the seals/tape around it water tight then you can shower away -- of course you have to be very careful not to let it hit directly on it. I kind of enjoyed these challenges after a while ... gave me a sense of triumph of this beast.

Take care and please keep us up on things -- dave

Myra,

This whole thing about PICC lines baffles me, since everyone who has either had one or knows someone who did knows that they stink. They are nothing but trouble. Yet, when I visited Eddie and Jimmy, they had PICC lines at the same hospital at which I was treated. I had a Hickmann and did not think twice about it. In the hospital, they had these plastic patches that fit nicely over it and allowed me to take a shower. My line was removed the day I went home. I had an internal jugular and it gave me absolutely no problems at all.

I have not had a significant fever since leaving the hospital post transplant. I did have a probable viral illness about the time of my birthday 3 months after my transplant and had a peak temperature of 100.4 (that didn't stop me from going out). Even when I had the flu and a cold I did not run a fever.

David will be just fine. He has YOU and that' all he needs. Everything will straighten out. I hope that he does not need another line right now and that they truly consider a Hickmann the next time around.

Cliff

Happy belated Mother's Day.

Thanks to all of you for your advice and wisdom. We were at the hospital once again yesterday for blood work and transfusions and it continues to be painful for me to watch David poked and proded by so many different nurses. Some certainly have a better technique than others. I know that he will be having another round of consolidation in the not too distant future and we will definitely speak to the doctor about inserting something more permanent so as to avoid the dreaded IV's.

Thanks also for your advice regarding the fevers. As of yesterday, he is officially neutropenic and we will continue to be vigilant with the readings.

One final question: David had C diff not too long ago so we were told to stop the stool softerers. He is still taking an antibiotic (vaincomycin) since he still tested positive last week during his consolidation treatment. Now he is constipated. We told the doctor and he said to start the stool softener and add laxatives. The last time that he chemo, he was plagued with diarrhea. Can anyone speak to this issue?

Once again, many thanks to all . . .

Myra,

Bowel issues are enough to drive one to drink. I was generally plagued with diarrhea and then soft, but frequent stools (I wanted to reply during your dinner with this lovely conversation, but thought I would write now). I generally refused stool softeners and had to take imodium for quite a while while convalescing. My bowel habits ultimately returned to normal.

He should continue the Vanco until he tests negative and then should be retested off of the Vanco about a week later. Unfortunately, we are not allowed to have raw fruits and veggies at first, so dietary manipulations are out of the question. I would recommend his taking MIRALAX. It is an osmotic agent that can be titrated, meaning you take it only when you need to. One capful in 8 ounces of anything. It has no taste or smell and is great in OJ or ice tea. If he goes well without it, don't give it. Also encourage fluid intake. I am not a water drinker and I found pushing fluids to be tough, but let him have soup, juice and water if he likes.

Let me know how this works. I am not a big fan of stool softeners, although they are much better than cathartics like dulcolax. Try the Miralax.

Cliff

Cliff,
I wish that I were more of a wordsmith to be able to find the right words to thank you, and everyone else on this site, for your continuing advice and support. You are always on the mark with your suggestions. The doctor had recommended senna and the nurse suggested miralax. I am familiar with miralax since that is the protocol that I have to follow for my all to frequent colonoscopies. I will mention it to David and I'm sure that he will take your advice.

When I reread my comments and questions, I get the feeling that I am coming across as a "nervous nelly". This aml road has been a treacherous one for the both of us and I am immensley appreciative to you and so many others for the kindnesses that you have shown the both of us.

Myra

Myra,

The Miralax will be the gentlest on David. Don't give him senna. That can give him cramps because it is a stimulant laxative. Also, its effect wears off.

PLEASE, do not consider yourself a nervous nelly. I might seem relaxed and calm about my own health, but even 2 years since my diagnosis, I am constantly worried and thinking about it. It is much easier to give advice than to take it. As Alice said in the DIsney movie, " I give myself some very good advice, but I very seldom follow it."

AML is horrible, but let's look at it with simply a clinical eye (no emotion). As bad as it is, we all have the chance to be cured. One cannot say that about many other malignancies. As all of us can attest, there are soooooo many speed bumps to navigate. They are inevitable. But the goal is still to get better, even if the path is far from straight and at times seems tangential. We will prevail. Remember that every time you get that sick feeling in the pit of your stomach. I wish I knew how to meditate, but I don't, so when I feel anxious I share my anxiety with others. We are all here for each other and when I have "kvetched," I have always been able to catch a loving ear. Where else could we ever be able to do that? Nowhere. I am in love with everyone on this site, pure and simple. My wife and family will just have to share.

Cliff

Myra

Don't be worried about asking questions. I only wish I had found this site during treatment so I could get the experience of others who have been there before. It is a support group and that's what it is for, to support you with whatever you need at the time.

Hoping your husband's bowel issue resolves quickly, I have had some of my own lately and it's not pleasant.

Nicole

Myra: I would go with what Cliff recommends, since I am not an MD. However, as far as experience is concerned, I had both constipation and the big D (can never spell it right, so why try). I always said that C was better than D, and perhaps pre-chemo that was correct. Until I had a really bad C that seemed to tear my insides out when it finally happened. So I got some stool softener -- do not know the name. Out of reaction I took too much of it, and had the D (or something like it) for about two weeks. All that to say that I am advising moderation. Don't over-do it. Get David to take a little of whatever and see if it works.

The problem is that it take a whole lot of good blood to make your guts work right, and with chemo its just not there. So you have to expect things to go wrong all over the place, both one way and then another. I found the best thing was simethicone -- OTC Gas-X -- whenever I got to rumbling down below I would chew some of that up. I even kept my own private supply of it just in case ... but I would tell them when I took it (sort of). I did not violate their rules with it, which as I recall was one every four or five hours ... not sure why.

Well -- hope this helps. Its sort of grin and bear it and keep the faith -- when the numbers come back to half way normal, he will be in good shape digestion wise. I would just advise ... do not over-medicate. -- dave

Thanks, everyone, for your advice. Nicole, I will remember that you said that this is a support group and that everyone is here to support each other. As a long time educator, I would always tell my students that there is no such thing as a "dumb question" because others may have the same question and were too afraid to ask. I'm sure that this is true on this site. I'm certain that there are many who read our threads but are too afraid to post themselves. Hopefully, they will learn how to navigate this disease through the questions and answers posted by others.

Cliff, I will remember to tell myself that this is a disease that has a cure, unlike so many other malignancies. Thanks for reminding me of that. As I write this post, David is once again in the hospital with an infection. I thought that we would escape this consolidation round without one, but, as Dave says, that's nearly impossible.

Thank you to all my friends - Andrea, Lily, Steve, Nicole, Cliff, Dave, Ed, and so many others for answering my many questions and keeping me sane.

Myra

Myra,
I am sorry that David is back in the hospital. I was one of those who experienced infections after each treatment, even if they gave me preventative antibiotics when my counts became low. I always improved once my counts became better. As for the IV situration, I would ask them about a port-a-cath. It is placed under the skin and the port is accessed with a needle. Once the treatment is finished, the port is flushed with saline/heparin and the needle removed. I was then able to shower freely and did not need to worry about dressings when not in use. I have had a PIC, Hickman, and Porta cath. The Port-a-cath is hands down my favorite. They did place a Hickman for my transplant (I then had two central lines for awhile). If David is heading toward transplant soon, I would ask for a Hickman. Praying his counts come up soon!
Take Care,
Suzanne

Myra,

I am a nervous nellie. I have become one from AML. I welcome it. My inner nervous nellie has actually and literally HELPED me and stopped some treatment that I didn't need a few times in my numerous induction stays. I ask so many questions and have educated myself (under Cliff's wisdom) that it has ALMOST come full circle to lessen my nervousness because I know I am aware of my treatment. I go back in for my Bone Marrow Transplant on June 3rd, and I will HOPEFULLY spend my last prison term (month in one room). I look forward to coming out on July 4th and setting off fireworks for all the loving, caring, suffering, wonderful people on this board. I am so thankful for dailystrength, but mostly I am so thankful for ALL OF YOU. Memorial Sloan Kettering has a site like this and it can barely hold a candle to this one. I don't know the reason so many people have stayed with this site even after they have forged through the "woods" of AML, but when I sit and think about it I do know the reason. The love and communal support here is like no other.

I had C/Diff on my last indiction and dealt with MANY of the same issues Dave is dealing with, and all I can say is they have resolved. Dave's will resolve as well.

Love to all,

Ed "not ashamed to admit I wore depends" Vassallo

We do have a chance to be cured! I sometimes forget that. Thanks for the reminder. So as I wait to finally learn of my biopsy results tomorrow, I will remind myself of the cure thing. :-) Thank you Cliff.

I went in for lab this morning and all my cell counts were almost to normal. But I also know that in two weeks they can plumet. It is going to take me awhile to trust these little buggers.

Ed, I can certainly understand why you are nervous nellie. All someone has to do is hint there may be a transplant, and they have to peel me off the ceiling. Seriously though, like you said it has saved you a few times.
July 4th will definately be fireworks time. We will all set them off with you. It will be so good to have this behind you.

lily

Hello everyone,
I am in need of some support/advice/widson. David had his first consolidation round April 29 - May 4. All went well with no serious side effects other than loss of appetite and fatigue. We were discharged on the final day of chemo and we were careful to follow all precautions at home. We came back to the hosptial on an outpatient basis every other day for transfusions and blood work. On May 12, David developed a fever and was admitted to the hospital. The fever broke after 36 hours and we were told that it was most likely a neutropenic fever because there was nothing in the blood, etc. Unfortunately, his white count since that day has very, very slowly inched up and we are still in the hosptial after 9 long days. His neutrophils are holding at 400 and the policy here is that he can't be released until they reach 1000. He feels fine and looks great according to all of the doctors. The doctors assure us that there is no cause for concern; however, my concern is that he is slowly getting more and more depressed after spending all of this time in the hospital staring at the 4 walls. His appetite has diminished to practically nothing and he is now spending most of his time in bed. I'm really starting to get worried. Has this happened to any of you? He had been so optimistic up to this point and was very hopeful about the road ahead. We still have a long way to go and I'm concerned that this could be a turning point for him. Thanks in advance for your help.

Myra

Myra,

My name is Dids, i had consolidation chemo last March 11 and came home after 7 days. I was re hosp after a week and stayed there for 13 days due to neutropenic fever. My WBC was 0.2 for almost 3 weeks even with Neulasta. They released me from the hosp after my wbc came up to 0.7 and Absolute neutrophil count of 0.5. Every hosp is different but I did have a conversation with my doctors about risk and benefits of going home. I strongly voice my preference of going home. But as Cliff would say " Those counts will rise", and they did.

Dids

Myra -

I am very sorry for your worry today. I don't have much to offer by way of practical advice, but do want you to know that I can definitely appreciate the concern around how David's outlook ties in with his physical state - this is something I worry about with my dad, as well. No doubt somebody with something of real value to add will be by with a response to your question, lol. For now, I want you to know that I am thinking of you and hoping both for David's numbers and his spirits to rebound asap!

All the best,
Robin