G-CSF

[Julianna]

Hey all... after hearing that my MDS may have been from my treatment for AA, I've been thinking about a few of the drugs that I have been treated with. And I read somewhere a while back (can't remember where, or exactly what it said) that G-CSF injections can have long terms side-effects on bone-marrow.

Does anyone know anything about this?

[Chirley]

Hi Julianna,

I don't know about long term effects, all I know is a long time ago my haematologist said that he didn't want to give me Neupogen in case it causes the bone marrow to start producing leukaemia cells. Some one on here told me that research has shown that it hasn't been shown to have any effect and that it was thought to be safe.

My Neut count at the moment is 0.11 but he still doesn't want me to have Neupogen. He repeated just the other day that he thinks it might potentiate leukaemia. This is despite the fact that he also said that my biggest immediate concern is getting an infection which may be fatal. I have decided to defer to his knowledge and trust his judgement.

Do you really think that the MDS may have been caused by AA treatment or do you think that it is a natural progression of AA to MDS?

Has any research been done on this?

Good luck with your next appt.

[Julianna]

Hey thanks for your question... yeah I really don't know about the progression from AA to MDS.

And I hear that a lot from my specialists too... "We don't know!"

I'm just so tired. And I don't have much family support. So I'm thinking I need to just trust my health professional... and take leaps of faith with them. Would really love to have someone to come to my appointments with me, and know someone is there when I need treatment. Don't like being alone. Jules

[Chirley]

Oh Jules,

I feel your pain when it comes to being in this by yourself. I told one of my friends of 22 years that I had MDS and that it was a form of cancer. I deliberately didn't go into details of symptoms or treatments etc.( she knew I had transfusions all the time but didn't know why) I know people don't like people to talk about illnesses, so I didn't. It made no difference. She hasn't called in or phoned me since I told her. I know she probably doesn't know what to do or say, but, I miss her, it was like losing a whole extended family because I followed her grandchildren growing up in photos and her anecdotes.
I also have elderly parents and I'm constantly trying to cover up when I feel tired or sick. It's all very lonely.

As for trusting your doctor, it's a defence mechanism. You are so dependant on them (literally your life) that you need to trust them. I think any illness is a lonely thing, but you grow as a person and become proud of yourself for coping and beating this thing.

I wish you all the best.

[Neil Cuadra]

Originally Posted by cme01

I feel your pain when it comes to being in this by yourself. I told one of my friends of 22 years that I had MDS and that it was a form of cancer. I deliberately didn't go into details of symptoms or treatments etc.( she knew I had transfusions all the time but didn't know why) I know people don't like people to talk about illnesses, so I didn't. It made no difference. She hasn't called in or phoned me since I told her. I know she probably doesn't know what to do or say, but, I miss her, it was like losing a whole extended family because I followed her grandchildren growing up in photos and her anecdotes.

The Internet can actually help with some of this. Rather than hoping friends will call you can send out news about yourself by email (or use social networking sites to let everyone know how you are doing at once). Providing enough information (e.g., an MDS link they can follow if they want) can remove some of the fear and mystery about the illness. Using email can also reduce the awkwardness for someone who doesn't know what to say.

I think it helps if you are matter-of-fact about the medical stuff and remember to talk about whatever you used to talk about too, like sharing news about a mutual acquaintance. Just as we don't want these diseases to define us, we want our friends to know that it's only one facet of our lives.

[lotusbud]

The sidespin to the thread seems to be telling people, which seems complicated. Since I have suspected MDS, seems silly; but then I have to explain why I am so very tired. Not telling leaves me lonely dealing with it, but also some people get overly worried... Especially when this thing is not going away like a bad flue! It just keeps on it for years. For some I also send the link, then they can look at things at their pace, I find the information quite scary !
Having dealt with hazardous materials a little, even exposure to benzene can induce AA. I wonder, how much more there are things like that; how does one know when too much exposure is too much (variables such as persons weight, exposure duration, particular sensitivity,...). Sometimes digging into drug information even in the net can give a lot of info on possible side effects.

[Julianna]

Thanks for your comments. You're right... MDS isn't everthing about me. And I don't want everyone to know. I recently moved to a new place, and have very few friends... and it takes a while to really get to know people. I am seeing a psychologist to help me with other parts of my life... and my MDS just has to sit on the shelf mostly.

All my friends are in Qld - and don't want much to do with me anymore. A long story (cue the violins!!!).

But you know what... I love animals, writing poetry, singing (but haven't done much of it lately), caring for others, and having a good laugh. Want to do more of that. That's who I am. It's gonna be a hard slog to keep my head up... but I hear it's worth it, right?

Jules

[lotusbud]

Hi Jules,
Had heard also it is worth it! I also like life; plants, animals, scenery, nice architecture, beautiful harmonious things... I have a veteran dog, who needs special care because of his advanced age. For a stroke of luck I am tending a bunch of plants, who I check every morning when the sun first gives a little bit of light. Also when I come from work, and with the last glimmer that colours can still be seen with..
The little things in your life is that counts, makes you feel who you are. Sometimes you have to substitute, but that is ok... Sometimes you make your dream come true, anyway. Just hum alittle, a tiny little minute..
When I feel bad, I just lie low; like waves of the ocean, I know there will be another I can swim with. Conserving the energy, and when the tide changes I am swimming again.
It is worth it, every bit of it.

[ann]

I agree with Neil, send out emails telling your friends and family how you feel and your progress. I send an update on my husband's disease and if I don't get around to sending it when friends and family are expecting it, I hear from them asking about him. He just finished his 14th round of Vidaza and is doing great. Has felt great the last 3 weeks. Just pray that he continues to do well. He is on a 28 day schedule. He has 5 days of Vidaza and then goes every Monday for labs and to see the doctor or nurse practioner. We are so fortunate that we have so many friends and a wonderful church family that pray for him daily. I don't know what I would do without the support of these wonderful people.
God bless you and I pray that you will reach out to your friend, maybe she needs to know that you want to keep in touch. Good luck.

[Julianna]

Thanks heaps, lotusbud and ann. (Thank you for your prayers). I have been going to a Church here and making some new friends. And I don't know where I would be without the Leukaemia Foundation. They are a great support too. You guys too! Thanks again. Hope your week is happy...

Jules

[Hopeful]

Hi Julianna,

When you first posted your comment that your doctor thought immune suppressant treatment caused the progression of AA to MDS, it jolted me a little. I did some Google research at that time and found some articles that seemed to think that ATG in combination with G-CSF may increase the probability of transformation. Other articles said that there wasn't a connection. So, it is still being debated and studied.

http://bloodjournal.hematologylibrar...10-01-234120v1

I read some other articles that had another theory that MDS/PNH may have already been there, but undetected, at the time of diagnosis. The immune suppressant treatment addresses the AA issues, but the MDS/PNH issues remain untreated and slowly expand, which is why it shows up later in life. Again...just more theories. Do you know if you had an signs of MDS at the time of your diagnosis?

I had proposed the question about long term immune suppression resulting in increased risks of transformation to my doctor, and he had said that ATG/CyA are used in transplant patients, yet the same is not seen. I don't know about G-CSF though.

I have a quesiton for you...how long were you on Cyclosporine the first time around? Did you relapse after stopping it? When you had a partial response, what were your counts at their best? My doctor said that it is unusual for people with a partial response to not relapse rather quickly, which is why I'm still on the cyclosporine. I'm encouraged though that you were stable for 14 years with a partial response!

[Neil Cuadra]

We believe my wife had MDS all along, even though her original diagnosis was AA for which she received ATG.

Even if some doctors think it could have been AA that progressed to MDS, and that the treatment could have affected that, I don't know that it would have changed the treatment decision. As long as the best information indicates a diagnosis of AA, ATG has a great track record. In other words, even if a statistical risk of progression is found, the risk without ATG may still be higher.

[Julianna]

Hi Hopeful. Yes I have done really good for the past 14 years! My platelet count started dropping slowly down last year, but I tried to ignore it. Until I needed surgery, so had a platelet transfusion. And months later it doesn't go much above 20. But seems to be staying for now.

Back to my AA diagnosis: they told me they were waiting to make sure I didn't have a pre-leukaemic condition (I know now that they meant MDS). But they said no, it's AA. I don't think it was SAA, but it did get worse as time went on. Lots of transfusions every 2 weeks. Searching for BMT match in my family - wasn't found. So they started ATG, Cyclo, Steriods etc. Only after I had a nasty infection did I start G-CSF. Which I was on for a few months I think. But I was on Cyclosporin for about 5 years. And after that I was really good!

All I remember about my counts over the years is that my lymphocytes, platelets, neuts, and hemoglobin have been just under normal. Lymohoctyes and platelets the worst. But they do go up and down of course. I just ignore it after a while... because they were acceptable.

I guess when I get unwell or infection (which seems to be a lot) I have a blood count to make sure things are ok.

So Neil... yes ATG did great things for me! So what the future holds is not in my hands... and I guess thats ok. 14 years without any real problems can't be sniffed at.

[paulaespada]

Originally Posted by Julianna

Hey thanks for your question... yeah I really don't know about the progression from AA to MDS.

And I hear that a lot from my specialists too... "We don't know!"

I'm just so tired. And I don't have much family support. So I'm thinking I need to just trust my health professional... and take leaps of faith with them. Would really love to have someone to come to my appointments with me, and know someone is there when I need treatment. Don't like being alone. Jules

Hello Julianna

Sending again a big hug.
My dear, indeed we are in opposite sites... I understand it when I read this post.
I understand that you need someone on your side and I need health professional support.
I wish we could be near each other.
But as we aren't, please know that you can count on me.

Regarding MDS after AA, I have read about it but not explaining why.
When my husband was having shot to stimulate WBC production, however, I was told by nurses, that this treatment would be the less possible to avoid future MDS. Jorge only had 3 shots, 2 weeks apart from each one.
By that time I learned that this WBC stimulation must be very parcimonious because it can trigger development of abnormal WBC.

Again, hang in there. You and Jorge will be fine!

Much Love.

[Julianna]

Thank you Paula. Yes we are so far away from each other! Isn't technology amazing. Have a great day!