Pic line protection
 

Not knowing excatly where I shoulod list this question I chose this one. I hope I am correct.

I did not do well on Vadaza so my doc has put a pic line in my arm and am now switching to Decagon, whatever that is. Each session I've be told will be about 2 hrs and for 5 days. Better than my Vadaza which was 1-2 hrs for a long long seven days.

Now with this brand new pic line I understand I have to protect it from water when showering. I was told by the nurses its a peice of cake just tape a plastic bag around your arm.

Either I am a spaz or they have never put a plastic bag on their own arms a any time. I tried the bag routine with little to no success. I'm now trying a plastic wrap I stole from the kitchen draw. Seems to work fine until its time to unwrap it from my arm in which case I find I can't can't find the edge to unwrap and I end of cussing and wrestling with myself and eventually give up and scream for help.

Anyone with a pic line have a better solution to protefting our pic lines? Sure would appreciate hearing from expereinced folks

My hospital has these shower wraps that are plastic sleeves that are specifically used to put over the PICC or IV for the shower. Otherwise I have really only heard of using the saran wrap and taping the top and bottom. Maybe you can mark the start of the wrap with a piece of tape or something so you can get to it easier?? Otherwise baths might be in your future :)

Laura

We used to use Saran Wrap until we found something easier to put on and remove: Press'n Seal from Glad. They sell it in the supermarket.

Pic Line and Dacogen
 

Roger,
I had a pic line for about 8 months and had the same problem keeping it dry. Hopefully your nurses are using Tegaderm over the actual entry point. For showering I usually used the sleeve that my daily newspaper came in with a lot of waterproof tape. It was sometimes more trouble getting it off than getting it on. During the day I would keep it covered with the top of an old sock which fit my arm pretty well and kept the end of the pic from snagging on anything as well as keeping it clean.
I did have a problem after 8 months when I developed an infection and blood clots somewhere along the line. It was removed and I now have a Power Port implanted in my chest which has given me no trouble after two years.

I was diagnosed MDS/AML in July 2007 and had 12 months of Dacogen (five days every 4 weeks) with very few side effects. I achieved remission and was off treatment for 15 months when I began to relapse. Started Dacogen again Feb. this year and have had 4 treatment cycles. This time around my counts are not recovering as quickly and the fatigue was much worse so my doctor and I are looking at the possibility of longer periods between cycles or lower dose. I see her again next week.

I have been very satisified with the Dacogen and hope your results are as good.

Hey Roger,
My son had a PIC line for months and he HATED anything sticking to him - not even saran wrap.
I ended up cutting the bottom of a zip lock bag so it was open on both ends, sticking his arm through it, then taping the bag to itself... careful never to tape anywhere near his skin.

I would have him hold his arm up against the wall when I sponge bath him.

Hope that helps.

Do your PICC lines not have clear plastic bandages covering the entry site or something?

With my Hickman and PICC lines, the nurses made sure that the line(s) coming out were exiting the bandage from the bottom so that water would not drain into the site, but other than that, I didn't need anything for the shower at all. I had a little, soft, tube of fabric that kept the line contained during the day, but I just took this off for the shower so it wouldn't get wet, and left the bandage as-is. I had no problems whatsoever for months, and never once had any site infections.

Dacogen
 

Roger - I do not have a PIC but started having Dacogen treatments as well. Finished two cycles. Are you having bouts of extreme fatigue? I am working 1/2 days for the past three weeks and am really tired. What is your diagnosis? I am MDS RAEB w/excess blasts. I had treatment ATG 7 yrs ago and then two months ago blood counts dropped again.

Dacogen treatment
 

Marie - I just started dacogen treatments two months ago. So far so good, but I have been writing to find out if other people are having the extreme fatigue. I see that you said your doctor may do longer periods between treatments, does that make a difference in the tiredness? I have not had a normal strength day since I started. How are you doing?

Dacogen fatigue
 

HI Susan,

I am trying to remember my earlier treatments in 07thru 08 and looking at my notes. I don't remember the fatigue being as bad as it has been since I restarted in Feb of this year.Back in 07 With my first couple of treatments they gave me Benadryl which left me very sleepy for the whole day so I asked to try without it and did fine. Didn't take any nausea drugs only Tylenol and did O.K. My biggest problem has always been constipation which I control with Senicote. I needed trasfusions after the first three cycles because the Dacogen took my Hemoglobin and platlets so low but none after that when my counts all started to rise. This time around I only needed one tranfusion after the second round. The fatigue really hit me this May after my fourth round when I found myself napping every day and just dragging myself around. (even had to call my daughter to ask with help with house work which I hated to do). The doctor had recommended another transfusion at that time but I begged off and slowly got some energy back. I am due for another round of treatments next week so we will see how that goes.
A BMB after that fourth treatment showed the blasts back down to 2-3% so the Dacogen is definetly working again. I see reading some of the posts on this forum that some doctors keep their patients on the Dacogen even after they reach remission but I was off for 15 months and did very well until the WBC started dropping again and that is when I was put back on. I really hope you have similar good results and that the fatigue clears up as I know how depressing that can be.I also hope you have a lot of family around for morale support because that has been a godsend for me.
Try to stay positive.
Marie

Marie
 

Hi - Thank you for your response. I am encouraged to hear that people have been on Dacogen for extended periods of time. I am trying to deal with the tiredness and am hoping it will get better or I'll get more accoustomed to it. We are holding off on transfusions for now. I start my 3rd round on the 19th and will see how that goes. I wish you the best.

Hi Susan,
I started 5th round of Dacogen yesterday after 11 weeks off. My white count was up to 3.6 and HGB 12.4 (normal) so encouraging I hate to go back on treatments as I know it will lower counts again. I've actually had some energy back the last couple of weeks but I know it won't last. I will meet with my new oncologist next week (old doctor moved out of state) and I am anxious to see if she has any new suggestions. The plan as of now calls for Dacogen every 6 weeks depending on my counts and response.
AS I mentioned before I had 12 rounds of Dacogen three years ago and it did put me in remission. I hope you see the same results.

Marie
 

Hi - Well I hope your treatments go easy on you. I start my next one on Monday and I just want to get better. I so far have made 3 full days at work. First time since May 25th. I wish you luck and keep in touch.

Dacogen fatigue
 

Hi Susan,

I just noticed that you get 40mgs of Dacogen while I only get 20. No wonder you are fatigued!
I've actually been hoping the doctor would give me a lighter dose. But I have had good results and can't complain. I sure hope it works for you too. Try to rest as much as possible and ask for help if you need it. I went on disability when I was diagnosed at age 65 and now try to get by on Social Security and savings. At the time I was looking at standard treatment which would have been 4 to 6 weeks of hospitalization and a possible BMT but after a lot of thought decided to try the Dacogen instead. Never the less the doctor kept me on Disability because of the danger of infection and when I wanted to go back to work I found everyone was cutting back not hiring. I think it has been for the best as my life is pretty stress free these days.
You'r in my thoughts and prayers

Marie

when I had a PIC line put in at the NIH, they used these stick on bandages that you would place over your PIC line to basicaly waterproof it. Then after your shower, you took it off. It was pretty sticky, so you had to be careful. Thankfully, I only had the PIC line in during the 2 week trial.

Regarding the Picc line. I bought the famous DrySomething. I already forgot the name of the product but its a rubber sleeve that goes over the area where you picc line is. You sqeeze the air out with this removable bulb and they say you can even swim with it. Postage included came out to be about $50.

Was it worth the money? The product sells so some obviously some like it. I did not. I found it difficult to get the sleeve over the picc line without disturbing it to the point where I almost yanked it out. I had great difficulty getting the bulb in the right positition to suck the air out and even when my wife helped me with it I did not feel confident it was water proof. I immediately sent it back for a refund which I am still waiting for.

I'm back to using Seal & Press or is it Press & Seal and seal it with tape I get from the clinic. A little time consuming but it works. If someone could design a nice simple but effective Picc line protector they could make some money.

If you've been following my saga you know I stopped Vadaza and am now on Decogen. Only one cycle but I feel better than i did on Vadaza and I'm so glad not to be getting those shots in the stomach. Now its sit down, relax, hook up to the picc line and call me when its over...5 days every 4 weeks.

so far I hadn't had any major side effects other than what we all expect...constipation and weakness.

If the side effocts don't get any worse you may continue to color me BLESSED

Thanks for sharing everyone. it helps us all to know we are not alone.

God bless us all

Marie / Roger
 

Good morning - Hope this finds you both hanging in there cause I am beginning to learn everyday is different. I had to go to the doc yesterday as I could hardly be at my desk. I was so weak. My counts were hgb 9. hct 29, wbc 2, and my platelete were very nice at 237,000. (they have never been before so they are starting to get normal) Doc said with my counts being what they are - I should be tired. The med is running its course. I start treatment on Monday again. He drew blood for other tests LDH (result 302 high) Iron - result 26 low. B12 normal. They will call me today. We've come to the conclusion I really am pushing myself and need to slow down cause this treatment will slow me down. I am going to try that. I am at work now and will stay till I get to tired. Wishing you both a very good day full of strength and energy. :-) PS Doc did say we will also talk about going on neupogin next week to stir up the WBC to produce, as treatment will knock me down further. Also my neutriphils were low so I am to wear a mask in crowds. :-(

Pic line protection
 

Roger

I have had 2 pic lines since 2008 and have not had much of a problem.
I have never needed to have added protection in the shower.
My dressing consists of a stat lock and 2 IV 3000 s (clear sticky dressings). This dressing is changed in the hospital every week.
There were a few occasions when I had to remove the IV 3000 s (edges were peeling up) and replace them. The first time I had to do that I was anxious but I managed it. Allow yourself plenty of time. I have not needed to replace IV 3000 for a long time. I think there was a faulty batch of them.

Best of luck with your Pic Line and your treatment[/font].