Nellie's Journey on Vidaza

[ESeda]

Hi All,

You can read the first part of our journey at this thread: MDS Naples FL, 3/2008.

We completed the eighth cycle on Vidaza last Friday. Got a Neulasta shot on Monday, did labs, saw the doctor and got Procrite shot on Tuesday, the 30th of Dec 2008. Labs were much improved: i.e., Plts at 95, Whites at 8.2 and Hbn at 10.1. Since we reduced the Vidaza from 135mgs to 67.5mgs, we have seen a steady rise in numbers.

We have four more cycles before we do a third BMB for comparison. Nellie is feeling pretty good. No savere side effects. Minor soars in mouth, tiredness and some bloating. Her spirits are high and pray to acheive a level of remission that will permit reducing chemo further.

Looking forward to the New Year. Wishing all on this forum better days. Happy, Healthy and Prosporous New Year.

Eli

[Birgitta-A]

Hi Eli,
How wonderful with such a good Vidaza response ! Congratulation!
Peaceful New Year!
Birgitta-A

[Ruth Cuadra]

Thanks for your good wishes, Eli. Everyone here benefits when people are as generous as you and Nellie have been by sharing the details of her experience with Vidaza. We appreciate your efforts!

Happy New Year!
Ruth

[ESeda]

Thanks Ruth and Birgitta for you comments.

Nellie was to begin her ninth cycle of Vidaza but had to postpone it a week due to sudden drop of CBCs. Since two weeks ago RBC down from 10.1 to 8.8, WBC from 8.8 to 3.2 and plts 96 to 90. Nelly fell and brused a rib and mashed her left knee last Friday. Xrays taken, looks like no brakes. Running fever of 100.5 today which is causing some worry.

Just when we thought things were climbing steadly. Well nepugen and procrite today. Hoping to bring counts up in order to continue Vidaza. Scheduled to check CBC next Weds and if good, back to chemo. Well hope this is the begining of a better year. Glad I have someplace to vent where I am understood. I'll keep you posted.

Hey Manny, sorry for your loss and thanks for sharing. Keep your head up, your a good man.

Eli

[Birgitta-A]

Hi Eli,
Nellies counts are still very good - you know when you take Neupogen your WBC:s fluctuate a lot (mine between 4 and 20) depending when you got the last injection.

Since I had neutropenic fever Sept 2007 I live like I am neutropenic because I don´t want to have any infections - I don´t really trust the WBC:s from Neupogen and they can´t help me if I get a virus infection. Now it is 16 months since I had an infection (knock on wood).
Kind regards
Birgitta-A

[ESeda]

I have been really concerned about Nellie's low grade fever. Running between 99 and 101.7. Seems highest in the morning then taperes off. But not returning to normal. Wondering if low counts can cause a rise in temperature. Also she seems more tired than usual. Comments please. Thanks.

Eli

[Birgitta-A]

Hi Eli,
As far as I understand the fever can come from

MDS
http://www.aamds.org/aplastic/diseas...y/wellness/#t2

Azacitidine
http://www.chemocare.com/bio/azacitidine.asp

or Neupogen but patents in the placebo group have fever too
http://www.rxlist.com/neupogen-drug.htm

Hope the fever decreases without any special measures!
Kind regards
Birgitta-A

[ESeda]

Thanks Brigitta for the links hopefully it's only something to do with the decease or meds.

I am not happy today because Nellie ended up in the hospital yesterday for testing. We had a nasty episode begining Sunday evening. Her temp shot up to 103. The highest it had gotten prior was to 101.7. Called the on-call doctor at the clinic we go to and he recommended Tylanol 500, two capsules every six hours. The fever dropped to 98.9 within one hour. But by the time she went to bed, the fever climb to 101 again. Took two more caps and seemed to be improving again. However, at around 3:00 am I senced her squarming around and mouning. I thought it was the fever again. But her skin was cold to the touch. About 7am I get a call from Dr Morris, her hemo/onc. He wants me to bring her in right away so we begin to get ready. Then it hits me, CHECK HER SUGAR. Well, it was 42. Now I should have suspected that all along, since I deal with my own diabetes on a constant basis. Gave her two glucose tabs and in 20 minutes she was feeling almost normal. She was admitted to the hospital by 11am after she was treated (labs & antifiotics) at the doctors office.

Her counts had not changed much from the last.

It's 7:30 am and I just got a call from Nellie. She said they found a touch of pnumonia and that all her counts dropped some. Hbl down to 8.2. Going to see her soon will provide more later. Please keep her in your prayers.

Eli

[Birgitta-A]

Hi Eli,
Good that Nellie is treated with antibiotics for her touch of pneumonia!

You know I am not sure that fever in MDS patients should be treated with Tylenol or similar drugs just to get the fever down - it is better to know exactely how much fever you have so you can go to the hospital and they can start looking for infections.

Then Tylenol is "considered safe by many, however, some incidences of platelet reduction were found in journal articles" if you look at the "Warning-list":
http://www.pdsa.org/itp-information/itp-warnings.html
Hope for good news!
Kind regards
Birgitta-A

[ESeda]

Thanks Brigitta.
But I have to say WOW, after looking at the list, I found many drugs that Nellie has been on for awhile that effect the platlets. What's a person to do??

Today Nellie's fever is gone and they finaly have her sugar under control. Waiting for return of new cultures and ct scan to see how bad the pnumonia and check for clots in the lungs. Don't know when she can come home, but if you ask her, she is ready now. So far no transfusion done but still aresnep and neupogen and antibiotics.

[Birgitta-A]

Hi Eli,
You know there are many members of this forum that have low platelets and have to be very careful - don´t count on that doctors know what drugs that may decrease the platelets.

I read about one member that was taking a painkiller that patients with platelets of 1 milj or more take to lower their count .

Nellies platelet count - 95 - is very good .
Kind regards
Birgitta-A

[ESeda]

Gotcha Brigitta, I am going to review all her meds against the list then bring it to the doc's attention.

Nellie is much improved today. Ct scan verified small amount of pnumonia, no clots anywhere. Hgbl still at 8.2, whites at 5.8 and platelet counts holding. Last Neupogen shot this morning. Getting vitamins, fungus protection and antibiotics. Sugar stable at about 210. Also getting mednizone IV, transfusion on hold, still maybe necessary.

Hope to meet with Dr Morris early in the morning. I am wondering if we should ask for another BMB. It has been four cycles since the last. With such good results last time, I am wondering if there is a down turn because of this last drop in counts. Any comments??

Thanks all for following our journey, God Bless.

Eli

[Birgitta-A]

Hi Eli,
Probably the infection caused the drop in Nellies counts - I shouldn´t ask for a BMP if I was Nellie.

You know all my counts got so bad when I got a tonsillitis July 2007 and three more infections following the first infection that I decided to live like I have neutropenia (very low neutrophils - a kind of white blood cells). Infections are really very dangerous for us. Since then I havn’t had any infections (knock on wood).

Here is info about neutropenia: http://www.neutropenia.ca/about/living.html
Kind regards
Birgitta-A

[ESeda]

Thanks Brigitta for your help and sharing of the research you do.

I finally got to meet with Dr Morris Friday morning at 7:15 at the hospital. I thought Nellie would be able to go home Sat morning but, Hemo dropped to 7.3 and now requires a tx, two units. So maybe Monday the Doc says. Sat moring the Doc then said she would be able to go home Sunday. Her reds up over 9.2, whits at 8+ and plts down to 35. Xray to check on the pnumonia came back all clear. However Nellie has been having elevated BP readings.

Later Sat morning Doc calls to say she won't be going home after all. A pietry dish came back with something growing at her port location. Infectious Decease people are now involved and will come to see her later today. Now What??? What can they do with this situation?? Pray this does not get out of hand. The culture that produced this result was tqaken in the doctors office last Monday. No Obvious signs of infection on her chest.

Please guys say a prayer for Nellie and help her through this time. Thanks.

Eli

[Birgitta-A]

Hi Eli,
When I came to the hospital with neutropenic fever they took all kinds of tests and X-ray of the lungs in a hurry and then started iv treatment with Zosyn without waiting for the reasults of the cultures. They had no time to wait for a specialist in infectius diseases.
http://www.zosyn.com/homepage.asp

They never found the focus of the infection (I have a port too) but within a few hours I felt OK and had no fever. I stayed in the hospital one week treated with Zosyn every 8:th hour a few days and then antibiotic pills.

Nellie doesn´t have neutropenic fever (almost sepsis) as I had and they will be able to treat her infection successfylly .
Kind regards
Birgitta-A

[ESeda]

Hi folks,

Things are much improved. Since the tx blood counts have improved, RBC 3.8, WBC 3.5, and plts in the 63's after tx of plts in preparation for removal of the port. It was descided to remove it since it developed issues with leaking in addition to the bacteria found in the culture done earlier.

We had to skip one day of treatment with the antibiotic due to saturation, too much drugs mixed in the blood stream, I guess. Will have treatment today, skip tomorrow and have the last one on Sunday. Monday we see the Doc.

The large number of bloches she had due to low plts is clearing up. She got one large area, maybe 8 by 4 inch area on her right side that I think will need further study. Looks somewhat like a puss bag but red in color. Doctor saw before we left the hospital last Sunday.

Well, got to go to next appointment. Check back soon.

God Bless you guys.

Eli

[Birgitta-A]

Hi Eli,
Good that Nellie is better ! Too bad with the problems with the port - she can perhaps get another port later on the other side of the chest.

I use Hirudoid to decrease my bruises - it works slowly but is effective.
Kind regards
Birgitta-A

[ESeda]

Last two antibx treatments done Sat and Mon. Reds and Whites down again, plts up some. Doc did not like the stint in the arm so had it removed. Will have new port placed on left side next Monday.

What a hassal this last few weeks have been. Maybe restart Vidaza week from Monday.

Lots of bursting blood blisters. Especially in seat area. Very uncombortable. Using Bactirum cream which seems to help promote healing. Doc suspects Lupus may be active. Don't need that now!

Spirits up, God Bless.

Eli

[ESeda]

Went thru all the hassle of admission to the hospital for implant of new port past Monday morning. 7am, aagghh. All for nothing. Turns out Nellie's counts to low for procedure. So Dr Morris orders new stent placed in the arm again after removing the last one just a week ago. So far unable to talk with the Doc to ask what was the logic in that. Have you guys seen a stent? I saw the one they removed last week and it's no joke. Must be 18 inches long. Into a vein. Gasp. And it's not over. Soon we try again for a new port.

Turns out those blisters Nellie had, (they seem to have almost cleared up.) was a staff infections that I believe was CS MRSA. They had some other name for it, not sure what it was. Frequent washing, drying and covering with bacterium cream seemed to do the trick. Platlets had dropped to 15 with Hgl down to 8.9. WBC at 3.5. Well we have to see the Doc on Tuesday. Hopefully this crises is over and her counts will improve enough to continue treatment. I still think another BMB is in order, but have not convinced the Doc. Will discuss again on Tues. Keep up with the prayers. Nice knowing you are there.

Eli

[Birgitta-A]

Hi Eli,
How terrible with the infection with some agent that maybe is MRSA !

They perhaps need the stent to give platelet transfusions before the new port is implanted? You know platlets should be flushed - I got platelets when my port was implanted 2 years ago but bled a lot so my port is situated on a hematoma.

I now understand that it is better to have a port that is lifted up a little because there is never any problems with the needles when I get blood transfusions and Desferal.

Nellie probably has low counts due to the infections - they always decrease counts.

Hope the counts will improve!
Kind regards
Birgitta-A

[ESeda]

Here we go again. Nellie admitted to hospital again from emergency room, Saturday morning. The pickline placed in her right arm was bleeding where it entered the arm. She had fever Friday night, 102. Gave her tylonol, it brought her fever down before bedtime. Sat morning she noticed the bleeding. Called her Hemo Doc, Dr Morris. He said take her to emergency quickly, so I did. After checking her CBCs, she had plts at 10, Hgbn at 7.5 and whites at 2.8. All numbers down. Xrays, CT scan and cultures stat. Took all day, from 1030 am until 930 pm to get her into a room on the Oncology floor. By then she had first tx of platelets, and first unit of whole blood. When we got to her room on the fourth floor her temp was around 100.3. She had lots of trauma to her left arm, because of being stuck so many times to find an access for IV line. They would not use the pick line already in her right arm for fear of contamination, I guess. I went home.

I get to the hospital about 10 am. Nellie has had a rough night. Fever up to 102.4 and back down, up then down, etc. They had stopped using the latest perifial line placed Sat morning, and were using the pick line placed last Monday. Still bleeding some but not as bad. More antibiotics, vitamines and packed red cells overnight. More antibiotics during the day. All counts doing much better, plts at 65, reds at 8.9 and whites stable. Speculation is the bleeding pick line is the culprit causing the fevers. That's what the doctors say. However, I noticed that when they finally removed the perifial IV line, placed in the ER, within the hour Nellie's fever dropped to 98.9, her headach went away and the pain she had in her arm stopped, huh.

When her floor doctor came around to give us the good news about the CBC results, which we already got from the nurse, I mentioned the pain Nellie had in the left arm. He looked at it and said, maybe that's why she still had that fever..... Hum. Well, problem is, the doctors want to remove the pick line, again, tomorrow. Then place another pick line elswhere, so that we can prepare for a port to be placed in the chest. What.

Later on a doctor from The Infectuos Decease Office comes to look at a boil the had appear overnight in Nellie's groune area. I mentioned to the doc that it looks like what Nellie had all over her rump, last week. And that I thought it was CS MRSA, and treated it as such and they all dried up quickly. But the doctor said no, it was the shingles. Well, hit me with a stick and call me stupid. I have had the shingles, Nellie has had the shingles and neither looked like what I saw on her bottom. And the one that develope in the groine area overnight did not look like the shingles we had in the past. The shingles we had hurt for a long time, nearly a year for me. Whazup~

Well, when I left Nellie in hospital tonight she looked good. Cheeks rosie, temp normal, apetite good and she said she felt strong. I hope she will be able to come home tomorrow and that they do not remove the pick line just yet. Atleast until they get the results of the cultures. If IV access is needed prior to placing the port, then why remove it just to place another in a few days.

As you all probobly can tell, I am fit to be tied. Am I missing something? Nellie will do anything the doctor says. And I worry when I am not there to question for her. Nuff said, till next time. Thanks for your comments and prayers.

Eli

[Birgitta-A]

Hi Eli,
You know when a MDS patient has fever I don’t think you should try Tylenol because you have to know what the real temperature is.

Good that Nellie is getting all kinds of examinations, platelets, blood, antibiotics, vitamins and packed red blood cells - she seems to get very good care.

Every other type of infection - even shingles - is better than MRSA. Hope the blisters will heal and not hurt! The blisters she had before healed and stopped hurting – didn’t they? http://www.mayoclinic.com/health/shi...ents-and-drugs
Kind regards
Birgitta-A

[ESeda]

Last night was really bad for Nellie. She looked so good when I left about 7 pm. I find out she had really cranked up the fever level to 103, during the night. They had to ice her down. This morning I arrive at bout 10 am, she is not in her room. She is down in radiology having her pick line removed from her right arm, the one that was bleeding, a new periphial access above her left wrist and another pick line stuck in her upper left arm. They brought her back to her room about noon, and she was a mess.

She told me they had to give her two bags of platletes and bring her temperature down before they could cut her. The idea was to place a port in the chest, they did not. Instead, another pick line. I just am not happy. But this is all temporary. A port still will be placed later on. How much later, who knows. Maybe after the next pick line. Hopfully they get it right, this time. Atleast Nellie is much improved tonight. At least she was feeling even better then last night. No temp, pressure good feeling peppy. Hope she stays that way. Keep up the prayers, they must be working.

Thanks Brigitta, you too Vera.

Eli

[Vera W]

Eli, This upsets me so much. Can she have her Vidaza as injections? Rob is giving me a blow by blow of his transplant experience and he already has bleeding issues and he is worried about infections. We all have to support each other I don't think any one else understands like we do. I am so fortunate to have good counts!Please take care..Love to Nellie

[ESeda]

Nellie was looking and feeling much better Tuesday except her reds dropped again were they had to give her two more units of whole blood. Otherwise no fever, blood pressure slightly elevated sugers high but all under control. Haven't seen her yet this morning but I have high hopes.

Hi Vera, taking shots in the stomach was considered, but Nellie has so much trauma going on from other shots that she opted for the IV. The port when it was working was wonderful. No discomfort and little to none side effects. She is hoping they can get one put in the left side to continue the treatments. The pick line that was placed yesterday seems to be working fine. Her platelets dropped some to around 45. I am hoping her counts hold up better since they found no bacteria in the pick line they removed, or in any of the other cultures done. So that's great news. Cross my fingers, maybe she can come home today or tomorrow. Well keep on praying.

God Bless, Eli