mds

[katherineann59]

Hi Eileen,
I'm doing good, thank you. I saw my nephrologist yesterday. My kidney function as dropped a bit, but still no need for dialysis - HORRAY! I go tomorrow to get another neulasta shot - doc wants me to get them every week. Begin another Vidaza cycle in 2 weeks. Still waiting for my bone marrow resuts. Taking each day as it comes and thankful I can still work and do most of the things I enjoy. Please continue to keep me posted on your progress - you are in my thoughts.
Kathy

[Steve Kessler]

A second culture of my port was totally negative, so it appears the first growth was some extraneous contamination. Anyhow my doc took me off of vancomycin after 2 days and said I was fine. The iv needle in your arm seems a bit cumbersome to me, but still better than shots in the tummy. Whatever works.

[Eileen]

Hi Steve,
Thats such good news.Hope it will continue to be for you..
The IV in arm was just one time, we`ll see what happens in the future.
Have a wonderful day.
Eileen

[Eileen]

Hi Kathy,
Seems like their on the right path.Do you have the results of your new bone marrow test?
My second wk after vidaza Iv & after 1 procrit shot ,my hmg is up to 11.6 WOW.
As of now I`m feeling really good.
Stay strong,I think of you often.
Eileen

[katherineann59]

Hi Eileen,
That's good news about the Vidaza. I'm still waiting for the results of my last bone marrow biopsy. I'm doing well, thanks, and I hope you are too. I go to the doc tomorrow for another shot of aranesp and some bloodwork. I don't know if it's the spring-time weather or the increase in aranesp shots, but I've been able to return to a more vigorous exercise program which means doing some form of exercise every day. For several months I had been too tired to exercise more than 2 or 3 times/week. I love to run and swim and I feel really good about getting out there and working up a sweat like I used to. So, I'm celebrating about that. By the end of the day, though, I still feel pretty worn out. Please keep me posted about how you are doing as you're in my thoughts.
Kathy

[Hattiedee]

Eileen and Steve:
My husband is to begin Vidaza treatments next week. He is scheduled to have a port put in on May 2...but we have been advised that a PICC line in his arm would be a much better choice. Also wondering why some people get Vidaza for 5 days and others for 7 days.
Hattie

[Birgitta-A]

Hi Hattie,
New research reported in ASH 2007 has shown that Vidaza for 5 days is better than 7 days. I hope the link will be OK:
http://www.abstracts2view.com/hem07/...L1_2077&terms=
Kind regards
Birgitta-A
69 yo, dx MDS Interm-1 May 2006, port-a-cath for transfusions and Desferal since Jan 2007 without problems, waiting for Eltrombopag so I can try Vidaza if I respond and my platelets will be better, asymptomatic

[Chirley]

Hi,

Yes, I agree Picc lines are good for short term access i.e. 3 months or so. There is the problem that the picc dressings have to be done at least weekly,there is a tubing hanging out of your arm externally and you have to be careful not to get it wet. If the weather is hot or you get fevers and sweat, then the dressing can lift.

I have had a portocath inserted. It was more trouble to have it inserted and it was a little sore for the first 1-2 weeks, but, it is completely internal. No tubes hanging out, and no worries about anything getting wet or having dressings done.

I feel a lot more secure because there is nothing hanging out of my arm, I don't feel as vulnerable to infection.

Originally I was reluctant to have my portocath inserted but now I absolutely love it. It makes life a lot more easy and painless.

I'm sure the doctors have their reasons for preferring picc lines, there might be some clinical indications that they take into consideration or maybe they are just easier to organise. Whichever way you go, they are both still better than ivs in your arms all the time.


Good luck.

Chirley

[Eileen]

Hi Hattie,
I was on vidaza 2 shots in stomach for 7 days every month for 8 months UGH.Now having vidaza iv for 5 days .they wrap mine with elastic tape over the bandages for 6 inches.I had no problem.I hear ports are better & may go that route in the future.I`m sure your husbands Dr is doing what he or she thinks is the best for him,but if you have any questions or concern ,dont hesitate to ask them.
Good luck to you both
Eileen

[Steve Kessler]

Hi Kathy,
I swim with my port with no problems. As a matter of fact, I've swum with the needle still inserted in the port (probably not recommended) while receiving vidaza. The protective covering over the needle is something that acts like your own skin and is watertight.
Steve
Here's the website:
http://www.bardaccess.com/powerPort/...ochure_web.pdf

[choijk]

My father also has been receiving Vidaza via IV. He has went through 3 rounds beginning of every 1st week of the month. He went through the process with no problem.
Wow Eileen, they keep the IV in for 5 days? For my father, they said, they dont keep it in for more than 4 days max. I dont know why. So my dad changes that port (? is that what' its called?) twice a week. It's been a smooth process so far. I will keep updating.

[Chirley]

Hi,

The hospital where I go has a policy that all ivs have to be changed every 48 to 72 hours. This is to minimise the risk of infection. Apparently the rate of infection of the iv rises substantially after 72 hours, especially if the person is immunocomprimised. These infections are potentially fatal.

There is a trial in progress which is designed to assess the actual infection rate of ivs per hours in situ compared to the standard 48 to 72 hours. I wouldn't fancy being the guinea pig, having the iv in until it becomes infected just to see how long it lasts.

It might be a good idea to ask if the hospital you attend has a policy in place re: dwell time for iv cannulas.

I am glad that you had no bad side effects from having your iv in for 5 days but it is a bit of a worry.

Chirley (I audit infections in hospital as part of my job)

[Eileen]

Hi Chirley,
I checked with my Dr about leaving the iv in for 5 days.I start Mon afternoon ,they check the site very carfuly the next day, then it`s out Fri Morn .Looks like as long as everythings ok they will continue.I have a highest confidence in them ,their connected with Moffittt Cancer center in Tampa FL one of the 2 centers of excellance on MDS in FL
Thanks for the info ,we can never be too careful.
My second cycle of vidaza Iv was was wonderful,never felt sick one day.what a differance from the 7 months in my stomach,My counts are great Hem,12 .4 also had 2 shots of procrit this month.So far its working.
How are you doing?Hope all is well.
Eileen

[katherineann59]

Hi Eileen,
I just had my 1st vidaza IV today. It was sooooo much better!!!! Like you, they will leave it in during the 5 days of treatment. How I wish I would have been doing this from the beginning! Thanks for the tip! I've been struggling with stomach cramps and they prescribed lorazepam for nausea. I took it last night and slept better than I have since I can remember. Plus, I awoke feeling refreshed and not lethargic at all. What a tremendous relief. I hope all is still going well for you. You are in my thoughts and prayers.
Kathy

[Eileen]

Hi Kathy,
I`m so happy to hear how much better iv vidaza is for you too.Are you getting your blood tests & anti nausea meds at the same time as well?Only 1 pick.
What are the stomach cramps from?
I was having awful night sweats when i had vidaza in my stomach but since iv thats stopped.Mon will be my third cycle on iv and as you,i wish i had been doing it the first 6 months .if my hemog goes below 12 they give me a shot of procrit,ususlly 2 a month, between cycles ,then its right back up.
Vidaza really does work for me & I hope your having the best results .
Your in my thoughts & prayers also
Eileen

[Eileen]

Hi Kathy,
Hope your still doing good on your treatment.
Thought I`d let you all know,
4 months on Vidaza IV & still no problems. it was 7 monhs shots in stomach.UGH My hgm is 12.8 which is amazing for me.procrit when i fall below 12.
How are you all doing?
Has there been any info on the vidaza pill?What a wonder that would be.
Keep staying strong ,one moment at the time,Your all in my prayers,
Eileen

[Birgitta-A]

Hi Eileen,
As far as I understand the clinical Phase I trial with oral Vidaza should be terminated April 2009. Then we have to wait for Phase II and Phase III if the drug is OK. That will take several years - it´s good that we can get the drug iv .

http://clinicaltrials.gov/ct2/show/N...+vidaza&rank=1
Kind regards
Birgitta-A

[Eileen]

Hi Birgitta,
Thanks for the information on oral vidaza.was hoping it was sooner but at least we have iv vidaza .Are you on vidaza?How are you doing?
Eileen

[Eileen]

Another advantage i`ve found to getting IV vidaza is no more night sweats,they were very bad with the shots in stomach.Don`t know if thats the reason but it sure feels good to sleep on sheets instead of towels
All be well
Eileen

[katherineann59]

Has anyone had any trouble with unexplained sores? I've gotten them on my hands, arms, and legs. I don't know if it has anything to do with my treatments. I don't see my onc for a couple of weeks, but I do see my nephrologist next week. The sores scab over and just seem to not go away. Thanks for any info.
Kathy

[Eileen]

Hi Kathy
I`m sorry to hear about the sores.i have no knowledge about that & havent had a problem with any .hopefully they can get to the bottom of it,& cure them.it must be so itchy.
Praying for you as always.
Please Keep in touch,
Eileen

[katherineann59]

Hi Eileen and Steve,
Thanks for the information. I'm still having my vidaza through IV and it is working much, much better for me. I've been having trouble with my stomach and have lost weight, but otherwise no problems. Unfortunately, though, my kidneys are acting up. I saw my kidney doc earlier in the week. He is concerned about my kidney function - I have PKD stage 4 kidney failure. He is running some more bloodwork and I'll talk with him again next week. Thanks for keeping me in your thoughs. It's so encouraging to hear about others successes. It'll be 2 years on Vidaza for me next month. Doc says the Vidaza is still keeping the disease in remission!!!!!! Please continue to keep in touch.

[Eileen]

Hi Kathy,

when i started vidaza IV my Dr said i would lose weight for about 10 days but i did`nt ,are you able to eat OK ?I lost 20 lbs when they started Chemo in stomach Sept 07 .after 2 mon`s i could eat but craved starch`s so let my self indulge ,really tried to gain the weight back,so far up 11 lbs..
Why is your stomach hurting?
So glad Vidaza is working for you.keep your spirits up.your in my thoughts & prayers as always,
Eileen

[katherineann59]

Hi Eileen,
Not sure why my stomach is bothering me. It may not be the chemo at all, but may be from something altogether different. This week has been much better, but this is my second week without treatment. My chemo doc doesn't seem to think it's the chemo. My kidney doc isn't sure what's going on either. Glad to be feeling better, so maybe I'll put a few pounds on before I go back for treatments in another week. I'm so happy you are doing well and feeling good. You are in my thoughts as well. Keep in touch.

[Eileen]

Hi Kathy,

Glad your having a better time right now.
Is`nt amazing how we feel so much better between treatments and then here we go again?i think it`s so we never take our good health for granted and cherish every good moment we have.
Have a wonderful day ,
Eileen

Have a wonderful day