mds

[Eileen]

Hi Again,
72 yr old woman RARS still having vidaza shots every month for 7 days & its working great,all levels are up .Procret when needed .it`s been 6 months since dx.have lost weight ,some hair,get night sweats ,but at least i can breath again,Have more energy,any very greatfull for this beautiful day.
eileen

[slrb2152]

Hi Again,
72 yr old woman RARS still having vidaza shots every month for 7 days & its working great,all levels are up .Procret when needed .it`s been 6 months since dx.have lost weight ,some hair,get night sweats ,but at least i can breath again,Have more energy,any very greatfull for this beautiful day.
eileen

Hi Eileen,

I join you in celebrating your good reports and successful treatments. Since my Mother (79 yr) was recently diagnosed with secondary MDS-RARS, I find your news especially encouraging.

It is my prayer you will continue to feel good and treatments will be a total success.

Thank you for reporting in. Please keep us posted on how you are doing.
Sharon

[Ruth Cuadra]

Hi, Eileen.

Thanks for sharing your good news. It's good for everyone when even one patient reports success with a given treatment. Could the doctors ever explain why you're having night sweats?

Keep in touch!

Regards,
Ruth Cuadra

[Eileen]

Hi Ruth,
My Dr said everyone has differant symtoms.he really did`nt know why I get night sweats..I go to Dr Zigler ,Gulfcoast Uncology,one hr from Moffit Cancer Center,,they work with them, so I`m very secure in the knowledge that what he`s doing is right for me. I get some nausea but it`s contolled with kytrel.my energy level is`nt very good the wk of chemo but after, i get 3 good wks and for that i`m thankful. RARS
Good luck to everyone:)

[Eileen]

Hi Sharon,
Thanks for your support.Hopefully your Mom will do well ,there`s so many good treatments now .We`re very fortunate to live in the age we do.
My prayers are with you both:) .

[Chirley]

Hi, I think there must be something definitive about night sweats. I have developed mild fevers almost every afternoon / evening. When I was discussing this with my doctor he asked if I was also getting night sweats. As I'm a woman of a certain age, it would be unusual for me not to get night sweats. I pointed this out to him and then he went off on a tangent about treatments for menopause. Consequently, I didn't find out what the significance of night sweats was. All my doctor told me, was, that one of the questions that doctors ask if they suspect someone has leukaemia is , " do you experience evening fevers / night sweats ?" Birgitta A wrote that, evening / night fevers have something to do with the release of cytokines (?) from malignant cells ,perhaps night sweats are from the same thing. I haven't been diagnosed with any malignancy but it is always mentioned by my doctors that they think I probably have a malignancy (based on test results) but they just haven't been able to pin it down. Having this illness has broadened my knowledge and can be very interesting. Pity it can make you feel like @#>*....... Chirley

[Joan]

Hi Chirley

I was interested about your mild fever every afternoon/evening. Don gets them too but I usually don't check his temp unless I think he is hotter than usual. Sometimes he then has night sweats but they have been less frequent in the past couple of months. Dr. isn't concerned about the low grade fevers (less than 101) Don also experiences chills, at the same time as low grade fever, every evening. He gets so cold he crawls underneath the blankets fully dressed. He is quite thin and again dr. thinks his shivering is the body's attempt to warm up.

Joan

[Chirley]

Hi, My doctor isn't concerned about my temps either. He just kind of nodded and acted like it was to be expected. I only found out that I was getting these temperatures because I'm admitted to hospital every 5 weeks for a night or two and when the nurses take my temperature it was always above normal in the evenings. When I realised there was a trend there I took my temperature at home twice a day for two weeks and sure enough, it went up every evening. When I first became ill I lost over 40 kgs and was cold all the time. I have since regained 20 kgs and I don't feel cold very much at all. If your husband wants to gain some weight, I can really recommend going to see a dietition. The dietetics department at the hospital I attend was wonderful. They worked with my likes and dislikes and arranged for me to get nutritional supplements through the hospital at minimal cost. After having been overweight most of my life, I didn't realise that you have to work hard at putting weight on too. It takes commitment to eat healthily when you don't feel like eating at all. Best of luck to you and your husband. Chirley

[Eileen]

Hi Charley,
At 72 & having gone thru a surgical menapose 30 yrs ago I know thats not the reason for my night sweats.Don`t get fevers with them only a soaked bed ,Hair & nightgown.fun huh?The only fever i had since dx was from infection,but chills are a lot different from night sweats as you so well know.What is cytokines?What are the tests results that make them think you have a malignacy?Your right,we learn a lot every day & somtimes it does make you feel awful,but as least we`re alive & can enjoy the special people
we meet.this journey of life with its twists & turns sure does put everything in perspective doesnt it?Keep enjoying the little things.
Eileen

[Eileen]

Hi Everyone,
Well it`s 6 cycles done with vidaza in stomach,Been doing good except for night sweats, thinning hair numbness & having more trouble with vidaza in stomach.but my hemoglobin level dropped from 11.3 to10.6 in 1 wk now 9.7 hemacrit 28.5 platlets 118 I know thats still ok
got shot of procrit,hope that will help .Dr. starting vidaza IV next wk .
hopeful but concerned vidaza has stopped working.Has anyone had the same results?
Good luck to you all:::)

[katherineann59]

Hi Eileen,
I have been receiving vidaza shots since 07/2006. I am scheduled to have another bone marrow biopsy next month. I tried getting the shots in my stomach 1 time and it was awful. I get my shots in the back of my arms. I end up with some bruising/redness and a few days after my round of treatment is finished, my skin tends to peel in a way that reminds me of a peel after a sunburn. I haven't noticed any hair loss. I did have to change my antinausea medication. I now take anzamet before each treatment. Another thing the treatment nurses do is split my dosage into two shots each day. That seems to work better for me. Like you, I get pretty worn out during my treatment cycle. I usually come home from work and head to bed. I've also lost weight - all in all about 20 pounds since I began treatments. I'm a bit nervous about my next bone marrow as I have read that Vidaza has a history of losing its effectiveness in time. I've been on a maintenance dosage of Vidaza for 3 months now - 5 treatments/month instead of 7. Good luck to you.
Kathy:)

[Eileen]

Hi Kathy,
Good to hear from someone that has the same symtoms as i do .also have hair thinning & night sweats.
Have been on vidaza for 6 months with the fun shots in the stomach.their going to start vidaza iv next wk.take kytrel for nausea & will have it with the iv.As you did lost 20 lbs at firsrt but have gained 6 back but they say will lose for 10 days .Go figure.I remember when i used to diet.
Dr.said i`ll be on vidaza indeffinatly.
Hope all goes well with your bone marrow test. let me know how you make out.
keep smiling & live only for this day.
Eileen:)

[katherineann59]

Hi Eileen,
I'd like it if you would keep in touch with me as well. I begin seeing a new oncologist next month - the one I've been with is closing her practice indefinitely. I've been told that I'm on vidaza for the long haul - however that will be. According to my oncologist, if you go off it for an extended period of time (more than one missed treatment cycle), it will lose it's potency and I'd have to try a new treatment. Have you been told anything like that? I may talk with the new oncologist about getting my meds through IV. Please know that you are in my thoughts.
Kathy

[Eileen]

Hi Kathy,
My dr.said the same thing,so like you I`m on it indeffinatly .

This cycle is going to be vidaza IV for 5 days .I`ll let you know how that works.
good luck with your new Dr.There are so many good caring ones.We`re very lucky.
Stay strong ,
Eileen

[Steve Kessler]

Hi Eilen,
I've used a PowerPort for over a year for my Vidaza and I have no discomfort. It also works for blood transfusions, blood draws (my arm veins are lousy) and other infusions.

Also, keep checking. Oral Vidaza is on a fast track to being approved.

Good Luck.

[katherineann59]

Hi Steve,
Thanks for your posting. An oral Vidaza would be awesome. I'm reluctant to have any type of port put in as I am a swimmer and this would end my swimming days - might be needing one soon anyway, though, for dialysis. I hope all is going well for you.
Kathy:)

[Eileen]

Hi Steve,
Thanks for the info.That sounds much easier.Does a port restrict you in any way?
I know I can have one but want to see how this goes first & if my Hemaglobin is going to continue dropping,i may need other options.
Really anxious for vidaza oral.What a relief that will be.
Sounds like vidaza is really working well for you,thank GOD.
Keep in touch & stay well
Eileen

[Steve Kessler]

Eileen, my understanding is that there are two kinds of ports, a Hickman catheter and my Powerport. The catheter stays in place with two leads leading out from where it is inserted in the chest wall. It's used when the need for chemo, blood and other uses are very frequent. It has to be kept clean constantly.

The Powerport is inserted surgically below the skin on the breastbone. Nothing sticks out and you can shower or hold someone close to you without restriction. There is a little cup, about 3/4 in deep and as wide as a nickel, to which is attached a line to the jugular vein just below the skin. It's not visible. A special needle is inserted as needed into the cup and cleaned when inserted and withdrawn. Very low maintenance. I leave it in up to a week when getting meds, sometimes getting it withdrawn if it becomes itchy and having another neede inserted the next day. It's not hard, but if your concerned, the nurse or tech can give you a shot of lidocaine so it's totally painless. I've become rather attached to mine as it saves me so much discomfort.

[Eileen]

Hi Steve,
Thanks for the info.I`ll keep that in mind.
I just finished my vidaza IV .they keep it in for the full 5 days with no discomfort at all.I wish I`d done this 8 mos ago/I also felt wonderful no nausea,they put kytrel in first.I still get awful night sweats .do you?
Hope all is going well with you ,keep in touch
Eileen:)

[Eileen]

This is for everyone who hates the vidaza shots in the stomach.I just had vidaza IV .it was keep in for 5 days.no problem,i did`t feel it in,only thing I could not get it wet .What a wonderful thing.No pain .Its really worth a try.
Good luck to you all.
E:)ileen

[katherineann59]

Hi Eileen,
Thanks for sharing your experience with vidaza. I go to a new oncologist tomorrow before beginning another round of vidaza treatments. I'm going to ask him about this. Since I started vidaza, I've been getting the shots in the back of my upper arm - getting them in the stomach didn't work for me. Thanks again for the helpful information.
Kathy :)

[Eileen]

Hi Kathy,
How did you make out with your new oncologist?I hope they let you try iv,it`s so much easier.They leave the needle in for 5 days wrapped,you don`t even feel it.They unwrap it every day,give you more meds & rewrap it.I use a plastic wrapper that the news paper comes in on my arm with an elastic so i wont get it wet,but i still stick my arm out of the shower,just real careful i guess.
My oncologist told me that you don`t buid up & immunity to vidaza but if you stop you have to start all over,who want`s that,
Hope your feeling well,stay strong
Eileen:)

[Steve Kessler]

Hi Eileen & Kathy,
I've been a big booster of IV Vidaza with my port. I still am, but received a bit of a shock this week. I checked into the hospital for blood and had an elevated temp (103). They first brought my temp down, gave me the blood and then did a culture from my port and a vein in my arm. Results aren't yet in, but it is possible that I have a skin bacteria infecting my port. I'm on vancomycin for 2 weeks to try to clear it up, but if not able, I will have to have this port removed and another inserted. I'm hopeful we can clear it up, but this shows the importance of hygiene at the site.
Steve

[katherineann59]

Hi Steve,
I completely forgot to ask my new oncologist about getting a port. He has changed my treatment cycle a bit. He wants me to get my Vidaza shots in cycles every 4 weeks instead of 6 and he wants me to get aeranesp every week. I won't begin another Vidaza cycle until next week, but I will ask the treatment nurse about it when I get my aernesp on Thursday. I hope you are recovering. I'm a bit nervous about a port. I love to swim and it seems this will prevent me from doing that. I also just had a bone marrow test last week. I'm anxious to hear the results as I've been told that it's the only definitive test to see if the Vidaza is maintaining its effectiveness - should have those results in a couple of weeks. Please keep me posted on your progress and thanks for the info.
Kathy

[Eileen]

Hi Stev& Kathy,

Steve,
So sorry to hear about the problem your having with your port.
still leary about having one.i think I`ll stick with the iv in my arm as long as have no problems.& it works.Good luck

Kathy
My uncologist said your body does`nt built up an amunity to vidaza ,I wonder?
I`ll just have faith .One day at a time,still have to keep reminding myself.
How are you doing?

Eileen

[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/view.php?nu=HEM07L1_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/pdfs/MC-0030-03_PowerPort_brochure_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. :eek:

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/NCT00528983?term=oral+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:(:confused:

[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