Watch and wait ends, Vidaza begins.

[Chirley]

Hi, I'm almost finished my 3rd cycle of Vidaza and the doctor said it doesn't look as if it's working yet. I'm still transfusion dependant with low WCCs. Today my neutrophil count was zero (also 0 when checked manually).

This has me concerned because the doc has said again just recently that he doesn't want to use Neupogen because he thinks it could provoke leukaemia. I'm currently on a continuous pump of antibiotics with more antibiotics every day in day care.

Can anyone live very long with no neutrophils? Lymphocytes are only 0.17 so I can't count on them either.

[Birgitta-A]

Hi Chirley,
You know in Sweden the very good researcher, professor Eva Hellstöm-Lindberg, after many years of research on the leucemic transformation in MDS patients treated with Neupogen has said that there is no increased risk for transformation to AML for MDS patients. "We conclude that Epo and G-CSF treatment does not affect overall survival or risk of AML evolution in comparison with supportive care only."
http://bloodjournal.hematologylibrar...ract/106/3/803

I have been treated with Neupogen 2 injections/week since Sept 2007 when I had neutropenic fever and now when I get Thalidomide I take Neupogen 3 injections/week. My latest BMB June 2010 still showed less that 5% blast cells.

I think that a lot of antibiotics can decrease all counts especially the platelets - look at hematological adverse reactions for the antibiotics you are receiving.

As you already are aware of it is very common that the Vidaza response often takes up to 6 months - we hope for the response to come soon!
Kind regards
Birgitta-A

[Chirley]

hi,

Just an update on the Vidaza response.

I had a BMB 2 days ago prior to starting my 4th round of Vidaza. I had the BMB because I had shown no response on my blood counts and my doctor wanted to see if there had been any change in the marrow.

I went into day care for a scheduled transfusion today and was told that my doctor was coming in to talk to me. It's his weekend off so I knew something was amiss.

Turns out that not only is the Vidaza not working yet but that my MDS had progressed to RAEB 1. He didn't tell me the blast count and I didn't ask. I was definitely not expecting this.

So, I'm not having the next cycle of Vidaza partly to see if there is any change in the peripheral blood (good or bad) over the next month and partly to see if my ataxia improves.

He is going to start pushing for the bone marrow transplant co ordinator to speed up the search for a donor.

I had 2 units of blood today, am booked for another 2 units tomorrow and for a further 3 units in 12 days time. My ferritin is now high enough to start chelation so I guess that is another item for discussion next visit.

The good news is, I have next week off from daily daycare visits.



Bye for now.


Chirley

[Birgitta-A]

Hi Chirley,
How sad that your MDS has progressed! You are so young that a SCT has a good chance to be successful - even if they do SCTs in older patients young age is still very important for a positive outcome.

Positive that your hematologist now is pushing for the bone marrow transplant co ordinator to speed up the search for a donor. If they don't find anybody you ought to be able to get cord blood - now they often give 2 units because there is not so many stem cells in cord blood as in blood from healthy persons that have been treated with Neupogen or similar drugs.

They have found that the outcome of SCT is better if the ferritin value isn't so high so iron chelation is a good idea.
Kind regards
Birgitta-A

[Chirley]

Hi,

I went into daycare today for a transfusion and I saw my doctor.

I'm going to have another BMB in 2 weeks to see what's happening after missing 1 cycle of Vidaza. I'm also booked for another transfusion on the same day. This will make 2 BMBs and 4 transfusions in 4 weeks and I thought I was going to have a break when the Vidaza was cancelled.

Depending on the results of the BMB I am going to be offered 4 options.

1 Restart the Vidaza (unlikely from the sound of it)

2 Supportive care only (not a long term option)

3 VPA and Thalidomide (not MY preferred option)

4 SCT (scary and exciting at the same time)

Today I had confirmatory HLA tissue typing repeated and a discussion with my doc about how it looks as if that is where I'm headed.

In the mean time I'm feeling well with the fatigue improved off the Vidaza and the ataxia improving.

My counts today are

WCC 0.4
ANC 0.1
Platelets 120
Retics 4

I heard this on the TV the other day when someone was talking about the army but it is so true of this disease too --- Hurry up and wait.


Stay well.


Chirley

[Debbie W]

You've been through quite a bit lately, did you have the next BMB and when might you get the results?

Hope you are feeling a little better, give an update when you can.

Best wishes,
Debbie

[Chirley]

Hi Debbie,

I had my BMB on Thursday and will get my results next Thursday. I'm also booked in for another 3 units of blood next Thursday as well.

I hope all goes well for your family, it's going to be a trying time for everybody but won't it be wonderful when it's all over and the illness is completely gone.

Best of luck for the 21st.

[Debbie W]

Thanks for the update and even if I do not post, I'll check for your update.

Appreciate the kind wishes, we all need a bit of luck!

Warm regards,
Debbie

[Birgitta-A]

Hi Chirley,
Hope the BMB will show improvement, that the fatigue and ataxia will decrease and that they will find a donor for you!
Kind regards
Birgitta-A

[Debbie W]

Thinking of you today (your time) and hoping for good results from the BMB.
Will check back tomorrow.

Best regards,
Debbie

[Chirley]

Hi,

I got my BMB results today. The doc was hoping my last increased blast count was due to a recovering bone marrow post Vidaza. That's why he cancelled my 4th cycle and redid my BMB before the 5th cycle was due. Unfortunately the blast count was still increased and in fact was slightly higher than the one a month ago.

He asked me if I wanted to continue the Vidaza and I decided to try again. So I start the delayed 4th cycle on Monday. I decided to do this for a few reasons. The first was I couldn't see the point of giving up on the Vidaza so soon when all the research shows it can take many cycles to work. 2nd... my blood transfusion requirements had doubled since delaying the 4th cycle..3rd... No donor has been found for me in 7 months, the Vidaza might delay disease progression long enough to find a donor.

My doc is so cute, he put his arm around me and patted me on the back today, it made me feel very safe.

Take care.

Chirley

[mausmish]

Chirley,

I wish you the best of success that the Vidaza will begin working and that you'll find a donor soon.

Hugs,
Karen

[Birgitta-A]

Hi Chirley,
Have you asked about the option to get cord blood?

"The advantages of cord blood transplant include the fact that it is readily available, carries less risk of transmission of blood-borne infections, and is transplantable across HLA barriers with diminished risk of GVHD compared to similarly mismatched stem cells from peripheral blood or bone marrow.

A major limitation is the relatively small volume obtained from cord blood collections, which makes using this approach difficult for transplantation in adults as the small volume results in delayed engraftment and increased risk of infections and mortality. The median time to neutrophil recovery after cord blood transplantation is 4 weeks, in contrast to 8-12 days after peripheral blood progenitor cell transplantation. To overcome this, pooled or sequential cord blood transplantation is practiced at some centers and has shown encouraging results; surprisingly, by day 100 after transplantation, cells from one cord blood have predominated, as documented by chimerism analysis."
http://emedicine.medscape.com/article/208954-overview
Kind regards
Birgitta-A

[Debbie W]

Wishing you luck with the next round of Vidaza and that it can bring this under control while a donor is located.

Warm regards and positive thoughts,
Debbie

[Chirley]

Hi,

I'm so happy. I was booked in for a routine 2 weekly transfusion today but I didn't need it. My Hb is 113, don't know what my WCC is and platelets 60. Looks as if the Vidaza may be working at last.

Downside is, my mobility is decreasing and I'm now having problems driving as I can't feel my feet on the pedals. I feel unsafe in the shower and think it's just a matter of time until I have a fall. I did have a bit of a stumble last night and landed on my butt on the floor of my bedroom and I couldn't get up no matter how hard I tried. I swallowed my pride and grabbed the phone on the bedside table and rang a friend to come and help me. Degrading and embarrassing. Consequently, my haem doc was concerned (rang the neuro doc) and I'm booked in for another brain/cervical spine MRI next Wednesday and, horror of horrors, a lumbar puncture as well next Thursday. I have always thought that I'd never want a lumbar puncture, just another demon to confront I suppose.

On the upside, I have found out that there are lots of caring people out there. I have been accepted into an organisation that provides transport for people who can't drive anymore. They pick you up at your house, take you anywhere you want/need to go (hospital, doctor, shopping, lunch with friends etc) and drop you home again all for $2 each way. They also provide someone to do the shopping with you and have lunch/coffee etc while you're at the shopping mall.

I have also been put in touch with a home care service who come to your home and check to see if anything can be done to make it safer, e.g. hand rails, new shower etc and then they subsidise the cost of doing any alterations that are needed. The same people also supply home cleaning services where they come in once every 2 weeks and do all the routine housework like vacuuming, mopping, bathrooms, kitchen, dusting etc for $7 a visit.

All in all it feels all kind of warm and fuzzy to know that there are really caring people out there all you have to do is reach out. This disease is starting to feel like I was meant to have it to learn to open up and let people into my life. Oh, oh. Next thing I know I'll be hugging a tree. Sorry to be so soppy.

Bye

Chirley

[mausmish]

Chirley, congratulations on the Vidaza success! Sorry to hear about your other difficulties but it is wonderful to find so many caring people around us. I've never had a lumbar puncture but my doctor tells me it is not as bad as a bone marrow biopsy. Best of luck to you. Keep us posted how it goes.

[Birgitta-A]

Hi Chirley,
Very good with increased Hb and platelets ! Too bad with with the neurological symptoms. Perhaps it really is Vidaza that causes them? Wonderful that you get help with everything from the organisation !

Hope you won't have to wait much longer for a SCT. As I have written before they have tried to find a donor for so many months that they now could start thinking of cord blood.
Kind regards
Birgitta-A

[Gene_In_Va]

Hey Chirley!!

I was so glad to see your post yesterday indicating that the Vidaza looks to be kicking in!! Sorry to hear about the Excess blasts, although if the Vidaza really starts to kick ____ they should come down as well.

I have my fingers crossed for you and will be following your progress.

Keep hope alive. You can beat this stuff!

Gene In Virginia

[Debbie W]

Very happy to hear that you did not need any transfusions and that the Vidaza may be working, of course not happy to hear about the lumbar puncture ... you'll be in my thoughts.

Sounds like you have tapped into a wonderful support system, sometimes just the small things can make a big difference in people's lives - and maybe even alter their thinking

Best,
Debbie

[Helen Robinson]

Hello Chirley.

Glad about the vidaza working but sorry about your other troubles. Life is certainly not simple at times and please take care of yourself. Did you ever think that your life was boring? Sometimes I wish that were the case now.

Cheers

Helen

[Chirley]

Well, I've had the repeat MRI (no results yet) and the lumbar puncture. My haem doc told me today that the CSF results showed an abnormality but that it was not diagnostic. My total protein and albumin levels were increased which could be anything from a tumour to hydrocephalus or chronic infection. He is leaving it to the neuro doc to investigate further but in the meantime the BMT will not go ahead until a definite diagnosis is made.


I wouldn't be surprised if it was some weird infection because my neuts have been sitting at 0.1 for some time now and I have considered myself very lucky to have avoided any nasty infections. I suppose luck has to run out sometime.

I have just come home from having my 4th dose of Vidaza for this cycle and I'm very tired (Hb is also low) so I think I'll have an afternoon nap.

Regards


Chirley

[Birgitta-A]

Hi Chirley,
Hopefully you will get antibiotics that can fight the infection in the CNS if you have an infection - at least it is better than some kind of tumor. I wonder if they continue to look for a donor even if they investigate your CNS symptoms?
Kind regards
Birgitta-A

[Chirley]

Hi Birgitta,

My doc was talking about viral infections mainly. He said that the zoster (shingles) test was negative and some other tests were negative too but I didn't recognise their names and so they haven't stuck in my brain. He also said that I could have hydrocephalus but that he didn't do a pressure test. I don't get headaches very often so I don't think I have increased pressure. He did say that if it's an immune process then the transplant can go ahead because auto immune disease can be cured by the transplant as well but the diagnosis of the CNS problem has got to be definite before the BMT can go ahead.

He did say that he had spoken to the transplant co ordinator and had asked them to speed up the process of looking for a donor, so that's given me some optimism. I have an appointment to see the neuro doc next Wednesday and I'm hoping for some answers then.

Day 5 of cycle 5 of Vidaza today followed by a transfusion. One of my work colleagues is going to join me in daycare today for coffee so that'll be really nice and make the time go quicker. They serve coffee and cake in daycare for morning and afternoon tea and the cake is always very nice. The sandwiches they serve for lunch aren't so nice though, always the same thing chicken or corn beef or egg. Still it's nice that they provide any lunch at all.

We are supposed to have lovely fine weather with 25 degree days on the weekend so I'd like to take a drive to the country to enjoy it.

Regards.


Chirley

[Chirley]

I went to daycare this morning for my Vidaza and ? transfusion. Good news is the Vidaza has started working and I didn't need a transfusion. Bad news is I have had my last Vidaza today.

My haem doc rang my nurse at daycare and said that he had spoken to my neuro doc and I was not to have any more Vidaza after todays dose. He said that I was not to panic but I needed to keep my appt with the neuro doc on Wednesday and to come and see him on Thursday.

This is very disappointing but nothing about this disease is easy and I just have to get over it and get on with life.

Regards.


Chirley

[Birgitta-A]

Hi Chirley,
Good with the Vidaza response and the speeding up of the process of looking for a donor!

You know we all have a lot of bacteria, virus and fungi in our bodies that don't cause any symptoms when we are OK. Some common virus are Cytomegalus virus (CMV) that can cause infections in many organs, Ebstein Barr virus (EBV) that can cause mononucleosis and JC virus that can cause neurological symptoms. Hopefully you were negative for these virus.

Interesting with a possible immune process - perhaps that would be the best explanation.

Have a nice weekend!
Kind regards
Birgitta-A