Julie's Adventure

[Julianna]

Hi there... My blood type is B positive and my family say that it's trying to tell me something! Thanks for this opportunity to get my situation out there... to people who I'm sure can understand.

I'm in Australia and haven't actually thought too much about my AA diagnosis for a while... only every few months for a blood test. But recently my platelets started to drop off and are staying around 20... which I guess is good that they're staying. (Diagnosed ITP, because other counts seem ok) I've been on high dose Prednisolone for 2 weeks, which didn't work, so this week (I am waiting for the call) they will be starting me on a clinical trial of a drug called Rituximab. So will see if that works...

They did a bone marrow biopsy which showed no AA, which is good! Should be happy about that but... what will happen next? They thought the Pred would work...

[Chirley]

Hi, hope things will go well for you. I understand that that drug is being used more and more for auto immune problems. I think I read it's being used for Crohns and or ulcerative colitis.

My brother was diagnosed with ITP for many years and then I read about Lupus causing platelet problems and asked my brother to ask his doctor for a test. He came back as being highly positive for Lupus. I forget the ratios now, something like 1:64 is low positive.....well his was something like 1:1600 or higher.

Just something for you to think about.

Chirley

[Julianna]

Thank you Chirley...

I noticed that you are in Qld. I've just moved from there to Vic. Most of my treatment happened at the Royal Brisbane. Now to the Royal Melbourne. Sounds like you've been doing the rounds yourself... hope they can find a solution for you.

Lupus hey? Do you think they would have thought about that already, concerning me? I should just ask I guess... thanks.

Julie

[Chirley]

Hi Julie,

Good luck with the move, but you know that a lot of Victorians retire in Queensland so you might come back one day.

As for the Lupus, you would hope that they tested you for it, but they hadn't in my brothers case. Although, it didn't make any difference to his treatment. Same problem, same treatment, different name.

I was recently asked by my insurance company what was the name of the disease I have. Well, I haven't been given a name for sure so that posed a bit of a problem. I just had to say 2 cell cytopenia with transfusion dependence. My haematologist said that he was reluctant to label me as having MDS (although bone marrow looks like MDS 5q del without the chromosome abnormality) because it would be rated Intermediate and would effect all kinds of things, like insurance and treatment possibilities. I just keep telling myself it doesn't matter but it would be nice to have a definitive diagnosis.

Hope you enjoy next winter BRRRRR

Chirley

[Julianna]

Had a restless sleep last night wondering if I should do the trial, or just leave things be. Having a real hard time finding someone to take me and bring me back from Melbourne. I haven't signed anything in commitment to it yet ... and it may just increase the platelets for a little while... I don't know what to do really. As far as I know my count is stable at the moment.... and may stay that way. The hospital is just so far away and my family here (Uncle and Aunt, and Grandparents) are either too busy, or getting to old to travel all that way!

My move seems to be a big mistake... and my life is in a bit of a mess anyway. Maybe I made myself sick with the stress...

[Chirley]

Hi Julie,

Your family might not physically be able to help but I bet it's good knowing they are there for you. Maybe if you tell the ? hospital ? clinic that you have transport problems they might me able to offer some suggestions. e.g. I know the Mater Private has a bus service that picks up and delivers some patients and my local public hospital has a service called LANDS (local area network driver service) where volunteers pick up and deliver patients for their appointments.

Unfortunately, I'm in your situation. I live at Loganholme and have to go to Chermside for my day care appointments. That is one heck of a drive in peak hour traffic there and back. My friends all work full time and my only family are elderly parents who can't drive and my brother who lives in the country. I have had times when I've gone to day care and the doctor has decided I have had to be admitted to hospital. It's very hard.....no one able to bring me nightwear, or toothbrush etc. My car is left in the car park for days and when I used to be able to go to the Mater Private it cost a fortune to have the car there for days at a time. Where I go now is only a day care and fortunately I haven't had to be admitted from this one because it would have to be an ambulance trip to the hospital.

I don't know what you should do about the trial and your treatment. All you can do is listen to your doctor, do as much research as you can and ask lots of questions. I'm sure you'll feel better after you've made your decision. Sometimes making the decision is the hard bit. I'm a bit of a procastinator and I've always liked to think that if I don't do anything the problems will go away but with your health that isn't an option.

Good luck with everything.

Chirley

ps if you do decide to come back to QLD you know the winters are good.

[squirrellypoo]

Hi Julie.

I just wanted to wish you good luck with the Rituximab! I had a four week dose of it back in September to treat an EBV reactivation after my transplant. They'll give the first dose to you reeeeeeally slowly, like over 6 hours to make sure you don't react badly, but fingers crossed you'll be like me and have no problems with the little bioengineered hybrid wonders!

[Julianna]

Hey thanks for that. I need some positiveness in my life at the moment!

I still haven't heard when it's going to happen. But I've been put in touch with the Leukaemia Foundation who may be able to support me throught this whole thing. It's more the emotional support that's missing in my life at the moment. My friends and close family are so far away.

Glad I have you guys to chat to. Thanks so much!

Julie

P.S. I bought an MP3 player yesterday... and I think it's going to be invaluable with my long trips to Melbourne and waiting around for treatment and appointments etc. A life saver!

[Julianna]

Got a letter from the hospital yesterday to say I have a appointment for my first Rituximab treatment... on the 23rd Feb... my birthday!

Happy Birthday to me!

I don't mind that it's my birthday. Just want it over with. My Grandma most likely will be with me for company, which I feel a lot better about. Nothing worse than being in a strange place on your own, not feeling well. But hope the side-effects will be limited. From what they've said, it sounds hopeful.

Jules

[Gloria J]

Hi Jules,

Hope your Rituxan (Rituximab) infusions will go well for you. I went through it myself to increase my platelets awhile ago. During the first infusion, my throat started feeling scratchy, but a little more Benadryl took care of that. The next three infusions I mostly slept through.

They do take a while though (anywhere from 3 to 5 hours depending on how slowly they decide to run the infusion for you based on your body's reaction to it) so be prepared. I brought my knitting, a book, lunch, and made a day of it! But, the Benadryl makes me sleepy, so, by the time it wore off, I was awake, the infusion was done, and I was on my way.

Best of luck,

Gloria

[Julianna]

I'm in a bit of pain... gradually getting more uncomfortable, a week after the Ritux, but after emailing the clinical trial nurse she said that she didn't hink it was a side-effect of it. So a bit of a mystery...

I saw my GP instead (because GP isn't 2 hrs away) and had a few blood tests. So will see if anything comes of that.

Would it be the Prednisolone making me feel this horrible? Or am I getting sick... my temp seems fine.

[Julianna]

Diagnosed on Friday with MDS. I'm a bit overwhelmed with this actually. Platelets still around 20. Other counts ok. So I'm off the Rituximab trial because I don't have ITP.

Nothing to be done at the moment, except get on with my life.... so be it. Like to know more about MDS though. I will read a few posts I think. Go back to the hospital in a month and see what happens.

Life surely is a rollercoaster at times hey.

Just had a question though... if my platelets are around 20, do I need to have a medical card or bracelet, for an emergency situation, like a car accident or something horrible like that?

Jules

[squirrellypoo]

Hi Jules.

I also was first diagnosed with AA and then re-diagnosed with hypo-MDS. Those two are so similar that the line between them is often blurred. For me, there wasn't much difference in treatment between one or the other, and it didn't really change how I felt about what was wrong with me - remember your body is still the one it was before, it's just a different name that will hopefully help find the treatment that's right for YOU.

Sorry you had to stop the Rituximab midway through. I'm sure that's a bummer to be told it was for nothing.

melissa

[Neil Cuadra]

Originally Posted by Julianna

Just had a question though... if my platelets are around 20, do I need to have a medical card or bracelet, for an emergency situation, like a car accident or something horrible like that?

There's no harm in putting a card in your wallet saying that you've been diagnosed with myelodysplastic syndrome and giving the name of your treating physician and the medications you are on.

The most important reason for medical cards/bracelets is to prevent emergency medical teams from doing something harmful, such as giving you a medicine you are highly allergic to. In an emergency situation you'd probably have your blood counts taken so doctors would know that your platelets are low, but perhaps it would help them to know why they are routinely low and so they'd particular attention to any bleeding or potential bleeding.

Even if a card in your wallet never gets used, it'll give you a little peace of mind to know that the information is readily available in an emergency. My wife gets asked by almost every doctor (even her dentist) for a list of her medications and known allergies, so she keeps a list handy rather than trying to recite them every time.

[Julianna]

Thanks Neil... yes I think I will do as you suggested, to carry a card with me.

And Melissa, thanks so much. This is certainly a longer road than I expected. But yeah, u are right about the diagnosis name just being different. I am having a chat to the BMT Doctor in about a month. My Hemo said that because I am 34 that BMT might be an option in the years to come if I needed it. Not sure what we'll talk about. Because for now I just have to get on with my life I guess!

Nice to have u here to talk to! Hope u guys are doing ok. I'm cool.

[squirrellypoo]

Well the nice thing is that if you are able to hold on, the odds just keep getting better and better as advanced are made in BMTs and more and more people join the bone marrow registries. My nurse specialist was just telling me yesterday that only ten years ago, they thought that 30 was really pretty old to be doing them and they'd never, ever do a second BMT if the first one failed. These days plenty of 50-60-70 year olds get BMTS and I know a lady at my hospital who's finally had her fifth(!!!) BMT be a success! So if you don't urgently need one now, I know it feels horrible to have this disease looming over you, but there can still be a positive side to all this!

[Julianna]

Melissa... once again THANK YOU. It gives me great comfort to know that someone hears me and understands the anguish of uncertainty in this!

And I am so excited for you to see you have a wedding date! Enjoy the season...

Jules

[Julianna]

Wondering if low-risk MDS can change into high-risk? ...especially in younger patients. I read in the AAMDS Foundation info that this can happen to anyone diagnosed. Anyone experienced that progression?

My Hematologist said that the damage to my marrow now, may have been caused by my AA treatment. Does this give me an increased risk of progressive disease or not? Just wondering.

This watching and waiting is not fun! Is it best to just ignore it while I can... platelets still not much above 20.

Thanks for listening!

[Hopeful]

Hi Julianna,

Why do your doctors say that you have MDS and not AA now? Did your BMB show increased blasts or cytogenetic abnormalities?

Since you had such a great reaction to immune suppression the first time, is your doctor's considering a trial of Cyclosporine alone to help bring up your platelets? I remember seeing a video on the AA&MDSIF website that showed that in immune mediated AA, the rogue cells remain in your system (but suppressed) after Immune Suppressant Therapy. If they have grown in number again over the years, perhaps you just need to knock them down again??

I was diagnosed with a morph between MDS and AA and have had a good response to immune suppression. My counts are still low but on a steady slow rise. I am still on Cyclosporine, which my doctor thinks is helping to "retrain" my bone marrow.

Keep discussing the possibilities with your doctor now, rather than waiting until you become transfusion dependent. I've heard that left untreated, immune-mediated bone marrow failure can lead to further stell cell destruction. So, I get nervous with the watch and wait approaches if there is the possibility that it is an auto-immune disorder! Did your doctors see something in your BMB that makes them think it isn't?

[Julianna]

Hi Hopeful. Yeah they did find a cytogenic abnormality. But it is in the low-risk category at the moment. I have bits missing and also an extra. They said that having low platelets from it is rare... but I think, crumbs... this whole thing is rare! They thought I had the platelet disorder (ITP) but didn't repsond to the immune-suppressive treatment for that. So now off Prednisolone altogether (thankfully! ...horrible stuff) and have to watch and wait, with my platelet count considerably stable, even though low.

Have to wait another month to see my specialist again. (Too many patients, not enough Doctors!) My Hemo just said to get on with my life while I can. I can understand that, because I have lived with counts like this for months now... so why change anything. Will take a next step, when and if it needs to happen. My Hemo is 2 hours away... so have to keep in close contact with my GP.... and educate her at the same time! Isn't it funny that we tend to know more about our health (this condition) than and GP! Need to be on the front foot with that though. Keep an eye on any different syptoms.

Thanks for replying. So great to talk with people who understand the jargon!

Jules

[Julianna]

One more thing... my Hemo actually told me that my MDS may have been developed from my treatment for AA in 1996 - over 10 years ago.... interesting. But of course it may just be a guess. There's many things that they don't really know.

[Helen Robinson]

Hello Julianna

The Leukaemia foundation in Vic provides transport for treatment is neded. We went to Peter Mac for a trial of Revlimid in 2007-8. We flew down each month from NSW. They are the top cancer hospital and do a lot of research and are happy to consult over the phone if you wanted a second opinion.

I have heard of secondary MDSfollowing other chemo treatments. it is bad that you are young but good that you may be able to get a BMT if needed.

Good luck

Helen

[Julianna]

Thanks Helen... yes I have been in touch with the Leukaemia Foundation, and got together this morning with a group of people actually - and I had a lot in common with a few of them! It was great to not have to explain all the jargon that comes with all this.... because they understood. But most of them were older people... but as I'm sure most understand, the generation gap is only a big as you make it.

So now I have made contact with them, I know how they are able support me, travelling into Melbourne etc. And I have even made some new friends!

So at the moment, things are ok.

Jules

P.S. I have heard a bit about Peter Mac from a few people today. I am happy with my Dr... but glad to know they are there if I need a 2nd opinion.

[Julianna]

Not much to update... last platelet count was 34! So the best it's been in a while. I have my specialist appointments in 2 weeks. And I feel a bit nervous with seeing the transplant Dr for the first time... just want it over with. Wish they could just get on with treatment, so it's not always hanging there over my head. But that's life with a chronic health issue.

Thanks for listening to me.

Jules

[Dick S]

Jules, I know what you mean about living with a chronic disease. I have the oh so very slowly progressive MDS kind on all three lines. The hardest part is dealing with the daily constant fatique. Some people understand, others don't. But, it is being on the "watch and wait" timetable that is killing me. Oh well, life goes on, I guess. Let's just all try to hang in there.