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]

Originally Posted by 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

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.
Eileen

[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