Please help me i dont know how to help my father

[Neil Cuadra]

Originally Posted by ziad adore my father

Today i went to buy for dad the neupogen injection, it seems that nobody have stock due to a shortage from the dealer, i called our local doctor to ask about substitute he ask me to buy Neutromax, i called the our other doctore he told me No, bring Zarzio !! Qhat is the difference and which one is better? Or which one has the better result? Should i wait till i find Neupagen??

As I understand it, Neupogen, Neutromax, and Zarzio are formulations of the same drug -- filgrastim -- and that's what really matters. The prices and trade names may differ by country but I think it'll be the same treatment with whichever one is available for your dad.

[ziad adore my father]

We are assigned to admit the hospital for dad on the 31/01/2012 to begin the second cycle of the vidaza treatment, Dad's first cycle was on the 4th of january 2012
But:

in 25/1/2012 i did for my father the usual CBC test and unfortunately the results showed (after 9 days from the last transfusion which took place on the 16th) :

WBC: 1.9
RBC: 2.56
Hmg: 8.1
Platelets: 13k
Neutrophils# : 0.5 ; absolute neutrophils: 361/cu.mm
Blast : 7
Ferritin:1523ng/ml

our Hematologist ask me to admit hospital and to get transfused 1 unit Platelets and 1 unit Blood since will will re-enter hospital in few days for "vidaza" so no need for 2 unit Blood in the moment.

so we entered hospital for transfusion on the 25th jan, and here is today the CBC's result (3 days later)

WBC: 2.3 nb: im giving dad 3 time a week neupogen
RBC:3.07
hmg:9.5
Platelets:72k
Neutrophils# :0.80
Blast : 6
Ferritin: 1651

1- am i on the right way? im always asking myself is there any missing action should i take to help dad to live longer and best quality of life, and im not doing it?

2- Any good results will appear after the second cycle of vidaza; for examplelatelets and hmg will last longer or more delay for transfusion, increase in any counts?

3- If dad didn't showed any side effects unless ( minor nausea ) due to Vidaza in the first cycle, may he show any bad reaction in the second cycle?

4-how can we avoid CONSTIPATION Due to Vidaza and Kytril ? before we start?

5- Dad feel always Breathless even if he crossed few meters, what can cause this shortness in breath any treatment? "no problem in lungs or heart"

6- Ferritin level is high 1651, what risk we are facing? and in which level it will be so dangerous for the body's organ? and when should i give him Exjade?

7- Doctors always wait until they see any sign of bleeding than they give patient plt. transfusion, why dont we put a limit to the platelets and below that limit we directly transfuse??? (i feel dad in high risk when his platelets are below 20s)

Thank you so much and im sorry for those long and tough questions BUT i hope that everybody will benefit from the questions.

hope you all the best health

Best regard

Ziad

[bebop]

the only one I can kind of answer is the platelets....they didn't give my dad any until his reached like 12 or 13k....they said the reason is it could cause him to need them more often. but once he started having them he got them 2 times per week because he was in complete marrow failure. hope that helps but your dad seems to be bouncing back pretty quickly.

[Birgitta-A]

Dear Ziad,
As you have understood it takes several cycles of Vidaza treatment to give a positive result - the adverse effects will come at once.

Here is an article about Vidaza treatment. They write "Patients with high-risk MDS must undergo prolonged treatment with azacitidine (Vidaza) to improve their outcomes, with a median of three cycles needed before the first evidence of response appears." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2948932/

I will try to answer your questions:
1. Vidaza is supposed to be the best treatment for MDS. I have seen reports with combination with Revlimid for better effect but that was only one trial.

2. As far as I understand it is common that the counts will decrease after the second cycle too - your father will probably have to continue to receive supportive therapy.

3. No, nausea and other similar adverse effects are often the same during the whole treatment - he is lucky.

4. As other members have written he should start early with Lactulose or other treatment for constipation.

5. Vidaza is a chemo and toxic for all cells - not only cancer cells. It is common that patients get very tired during treatment.

6. As I have written in many posts to different members increased ferritin is not an important problem for patients with a severe disease. It takes years for the iron to cause damage to the liver, heart etc. Exjade is quite toxic too.

7. You know our plateles have different quality. Mine are dysfunctional and I get petechia around the eyes, small bleedings from nose and mouth when they go down to 22. Other patients have much better platelets and manage with very low counts. They should not be transfused too early because they can be refractory.

I think your father is getting very good care ! Hope he will respond to the treatment!
Kind regards
Birgitta-A

[ziad adore my father]

Thank you so much Brigitta...you gave me some hope

best regard

Ziad

[Birgitta-A]

Dear Ziad,
Your positive feelings will perhaps increase your father's fighting spirit .
Kind regards
Birgitta-A

[ziad adore my father]

I admit my father to hospital today, he supposed to start the second cycle vidaza, but our hematologist is confused if he should give him vidaza with a very low neutrophils=0,4 and wbc= 1700.
What do you think should we never take vidaza during low wbc and neutrophils?? Or it does not matter??

[Birgitta-A]

Dear Ziad
In the info about prescription for Vidaza the drug company writes:
2.3 Dosage Adjustment Based on Hematology Laboratory Values
For patients with baseline (start of treatment) WBC less than 3.0, Neutrophils less than 1.5, and platelets less than 75.0, adjust the dose as follows, based on nadir (lowest) counts for any given cycle:
Neutrophils less than 0.5 or Platelets less than 25.0 give 50% of the dose.

If a more than 25% increase above the lowest count is not seen by day 28, counts should be reassessed every 7 days.

That means that the dose should be reduced to 50% of the normal dose and if the counts not have started to increase after 28 days the next cycle should be delayed.

http://www.vidaza.com/pdf/PI_FINAL.pdf

Kind regards
Birgitta-A

[ziad adore my father]

Dear Brigitta; today supposed to be the second day of vidaza but our hemathologist decide to delay it because of the low ANC= 350 and the wbc= 1500, and told me you should take him home and do frequent cbc test untill the ANC reach 1000 then we come back to hospital to continue the 2nd cycle, i ask him what if the wbc did not go up?should i give him neupogen? He told me its not necessarily to go up due neupogen but we are obliged to wait. My question is why doctor is not sure that neupogen can raise immunity? And are we wasting time during waiting the raise of wbc? We need vidaza to reduce blast and we cant take it and we never know when ?? What should i do i feel bad or hopeless to go home and and wait wbc to raise, i feel its a wast of time i dont want him to reach the leukimia level i want to go back to the low risk MDS

[Birgitta-A]

Dear Ziad,
Good that your father didn't get Vidaza now - his counts are too low as his doctor said.

Hopefully the Neutrophils (and the other counts too) will increase. Vidaza is probaly still working in his bone marrow.

You should do as his doctor told you - control WBCs often. If they are going down you should give him Neupogen.

I have never read anything about Neupogen giving immunity. You know I have been taking Neupogen injections - mostly twice a week - during more than 4 years and was able to stop taking the injections when my counts increased after treatment with Thalidomide (1.5 years later).

Nobody knows when your father can start taking Vidaza again - it is quite common that the cycles are delayed.

Do look out for infections! Be aware of infected persons and infected food.
Warm regards
Birgitta-A

[ziad adore my father]

Before yesterday was the wrst day ever, dad had fever 39c from mouth, and suddenly became breathless more then usual. I took him directly to the ER, there they did for him many tests such as lung xray (normal) urine test ( all negative), chemstry and cbc. Cbc showed:
Wbc 1700
Hmg 9.5
Plts 14k
ANC 730
The day next, they told me that we need 48 hours to know the type of the infection my dad got, the day after, he got platelets transfusion but unforntunatetly his cbc test the next day was bad:
Wbc 1400
Hmg 9.0
Plts 80k (due transfusion in same day)
ANC 128 (!!!!!)

What make me mad is day after day his anc and wbc are getting lower and lower even with the daily injection of neupogen ..... Whats wrong??? Im so afraid why neupogen is not working? We need that he recovers his wbc to be able to continue the vidaza treatment
I feel dad coming worse day after day and we are not able to live at home any more we spend more time in hospital and what next?

My question dear all, will my dad have his wbc , anc, up again?

[ziad adore my father]

Dear brigitta;
Our doc. Propose to dad due to that infection an antibiotics 2000mg Q 8hours !!
Isn't it too much for his age ??
Im afraid that it affects his kidneys !!!

[Birgitta-A]

Dear Ziad,
It is common that we get fever due to infections when our Neutrophils are low and that they never find the the bacteria, virus or fungus. They have to start treatment with antibiotics and hope that the drug or drugs will be effective. Most antibiotics are not toxic.

All counts can decrease when we have infections and they will increase when the infection is treated. Too bad that Neupogen can´t increase the WBCs now but the so called cytokines from the infection are stronger for the moment.

Hope the fever will decrease!
Kind regards
Birgitta-A

[ziad adore my father]

Before yesterday my father had platelets transfusion, and he got a raise in plts from 20.000 to 100.000, in two days his platelets become 50.000... im afraid is his body became refractory to platelets transfusion? and if YES, what is the solution? otherwise in this case we can never leave hospital, there should be a solution for that...

[Birgitta-A]

Dear Ziad,
As long as your father's platelets increase (very much really) after the platelet txs he is not refractory.

There are 2 drugs that can increase platelets - Promacta (Revolade in Europe) and Nplate. None of them is approved for MDS but MDS patients can get them off record. I don't know if this is possible in your country. Nplate can give increased blast cells and we don't know if Promacta has this adverse effect.

Many MDS patients are receiving blood txs and platelet txs as outpatients.

Hope the infection treatment is successful and that your father is getting stronger!
Kind regards
Birgitta-A

[ziad adore my father]

Dear friends
Today is the last(7th) day of the 2nd vidaza cycle, no more fever or infection, and we should leave hospital after 13 days, but unfortunately since 3 days my father creatinine has been risen from 1.2 to 1.4 and stay for 3 days 1.4 , doctors asked us to stay two more days to control creatinine but they still dono why creatinine went up, im now waiting the results afraid.... Does mds affect kidney??? How? His
BUN : 35
Crt: 1.4
GFR: 48
are we facincing a kidney desease? His creatinine never rose that high im afraid that it raise more and more

[ziad adore my father]

Today another blood test shows creatine: 1.7
Gfr:41 bun:38...plz tell me is my dad facing kidney failure

[Birgitta-A]

Dear Ziad,
Very good that your father has managed to receive the second cycle of Vidaza and that infection/fever was effectively treated!

I have never read that MDS affects the kidneys and don't think high creatinine is one of the many adverse effects of Vidaza. The increased creatinine is probably due to some other drug. Remember that the kidneys have much reserve capacity - we manage well with one kidney.

Dietists always recommend patients with blood cancer to drink much - 8 glasses of fluid more that they usually drink. Drinking much is a way to help the kidneys to work and decrease the creatinine.
Kind regards
Birgitta-A

[ziad adore my father]

Dear friends;
I cant understand the relation between my father desease (AML) and the fever which comes suddenly and sometime disapear sudenly altough the wbc and the ANC are not to low : ANC=950.
My question is do AML make fever?
How to manage with fever(39c) when we r at homo instead to leave for hospital right away??
Yesterday at night suddenly dad got 39c and we went emergently to the hospital they gave him Tazocin 4,5g Q6hours in addition to Fenelgan.

[Birgitta-A]

Dear Ziad,
In many blood cancer diseases like AML and MDS the patients have too much so called cytokines. Some of these can cause fever. If the fever is more than 38.5 C during 4 hours the patient should go to ER at once because the fever is probably due to an infection and the patient should have antibiotics like Tazocin.

Hope the treatment will have good effect!
Kind regards
Birgitta-A

[ziad adore my father]

Our hematologist still confused why dad has high fever almost the day long, it go down(37.3c) after taking paracytamol for 6 hours than go up again to 39c .
The did for him blood culture 3 times and nothing apear they change the antibiotics from tazocin to meropenem with fluconozol as a new wide range antibiotics but still nothing changed chest xray showed lungs clear. What do you think fever come from ? Dad feel so so weak after a 1 week fever and seems no doctor know this fever is related to!!!

[Birgitta-A]

Dear Ziad,
When the temp. is as high as 39C your father has an infection. The doctors can only look at the blood, urin and so on initially and then start treatment. It is common that they don't find the agent.

When they have started treatment (as they have to do) it is much more difficult to make the bacteria, virus or fungi grow in the test tubes so if tazocin isn't working they have to try something else. Fluconozol is a drug for fungi.

Hope the new antibiotic will work!
Kind regards
Birgitta-A

[ziad adore my father]

Dear all;

yesterday dad had transfusion 2 units blood and one unit Platelets, actually he needs transfusion on weekly bases sometime more than one week.

The problem now, is the fever. last night and after platelets transfusion his temperature went up to 38.1c than went down to normal before discharge from hospital and than we quit hospital. (he is on the following antibiotics: Valtrex, Fluconazol, Levofloxacin)

Today his temperature is oscillating up and down between 37.6c and 38.0 and i have no idea the reason of this fever. i called his hematologist he asked me to give him a new antibiotics for 7 days (Dalacin300mg) and wait and watch fever.

honestly im afraid from the night fever to go up above 38 and dono what to do then....and now he is taking 4 kinds of antibiotics and i dont know what side effects they can make.

Dad is Neutropenic and his ANC is always between 100 and 200 and his doctors has stoped the neupogen because it may raise the blast counts.

so hard to be scared all time waiting temperature to go up and down every 15mnts and cant know if we will stay home or go to hospital....

any idea about fever and if we can stay home even if temp. goes above 38c without IV??

[wilmasdaughter]

Ziad - Like you, I am primary caretaker for my mother, who at 89 years old, has end stage MDS. What I have discovered over the past 12 months is that there is no rhyme or reason to what MDS can and does "do" to the body. It is usually not like other illnesses where some treatment or drug will make the person better forever. I've learned that MDS has a MIND OF ITS OWN, and chooses when and how to attack the body. My mother has good days/weeks and bad days/weeks. I am celebrating her here and now because I don't know how long she will be with us. I used to second-guess everything the hematologist said and did, but I don't anymore. My advice is to try to stay positive and focus on your father from one day to the next, and don't dwell so much on the minutiae of the medical things unfolding. He needs your undivided love and attention.
Take care.

[usaf1125]

Wilmasdaughter, you are right, MDS affects every one differently. You feel great one day and miserable the next.It is avery strange condition. All I or anyone can say, is give your Mother all the love that you can. I know that it's hard to lose a loved one, my Mother, Father and Sister are gone, I miss them every day that goes by, so love her and care for her while you have her. I don't know why MDS was put on this earth, maybe so we would realize how lucky we have been to have our loved ones. I know it's a lousy condition, we can only be happy for the good days, and hope the bad ones don't last. That's all I can say to you, love her and try to keep her happy and comfortable as much as you can.