for only we who have MDS

[katydid]

MAGS , LAURIE – WHERE ARE YOU GUYS ??? I am drowning in people on this site who care about people who have MDS- but love them dearly as I do , and where would we be without them ? – I need to talk to people who have what I have – so hey – how many of you out there ??? please post here – and if you don’t have it – then please don’t post here – but if you read this and you know someone who has MDS – please send them this link so they can know they are not alone xxxx Cathie – from New Zealand – ie the other side of your world !!!!

[Laural]

Still here…back to work this week in the schools and doing okay. Just went through treatment for tick-related disease (some people collect shells in the Outer Banks; I found a tick instead). At a rather scary point of not having any good trials that I qualify for…so have a stable blast load of 5% currently, feeling quite good with minimal transfusion needs, but would like to know there are some options ready in case the blasts take off again.

[katydid]

wonderful to hear from you Laurie.- ticks are bloody awful things – you poor thing – how on earth did you manage to ‘catch’ one of those. what is ALL ??? have you worked the whole time ? – my blasts are only at 2% but I have to go in for another biopsy soon so we will see if there is any advance on that !!! When you say minimal transfusion needs can you tell me a bit about your transfusion history – I had one 8 weeks ago and am still going quite well though starting to feel real tired again now. My big thing is my change of appetite – has anyone else ever noticed it ?? I start to get very fussy about what I eat and lots of foods that I normally ok with start to taste odd and I can’t eat them. Especially meat and things that are overcooked or pre prepared/ pre packaged. I can’t find any reference to this on any websites so maybe it is just me ! The other thing I really notice as my heamoglobin levels go down is an increasing irritability and a decreasing sense of being able to cope with external demands on me ( I most notice this at work – if anyone is even slightly horrible to me I get completely thrown by it )
Cathie

[Laural]

ALL is acute lymphocytic leukemia. My MDS is secondary to the methotrexate used to treat the initial leukemia when I was a young adult. I have had over 250 transfusions, generally red blood cells, occasionally platelets, as those are the two blood lines that tend to decrease for me. I run a hemoglobin of 9 currently. My body has adjusted to this low over the years…I generally will be below 7.5 before I need a transfusion. I get increasing fatigue and fogginess (and what my girls refer to as TBS "terrible blood syndrome"–the extreme irritability that you described) when I am heading towards a transfusion. I have held steady since June now. I do not experience any decrease in appetite when I am low…more typically I crave carbohydrates (and caffeine)at that point as the sugar gives a quick burst of energy.

[Zoe]

Cathie,

I am here. I have been dealing with life in general, which has been crazy for months. Now I have a premie granddaughter in ICU. She is 55 miles away, I am going to see her tomorrow. Only 4.5 pounds, but an incredible 18 inches long.

My hgb is sitting around 10 for now.

Today I sat out in my yard and watched the Pelotonia riders go by. They are over 2000 bike (pedal type, not motor) who are riding to raise money for cancer resarch. I missed Lance Armstrong in the morning though.

Zoe

[katydid]

Laurie – wow 250 transfusions – that is mind boggling !!! Did they ever have to do that thing where they have to get rid of the iron build up in your body ?? so amazing that you seem to still be going strong after all these years – especially amazing that you beat the luekaemia. do they have an opinion about what might happen next with you ( not that it is easy pinning doctors down to giving an opinion about prognosis !!! )
How old are your girls ?? Good to hear about the irritability and that I am not alone – my family has copped it a couple of times I’m ashamed to admit.

Zoe – lovely to hear from you – bless for your new little grandchild – I hope all goes well with her. My next grandchild is due in Jan 10 – and I have a delicious grandson who just turned 13. The race sounds like fun – Lance Armstrong was the guy who won the Tou de France several years in a row wasn’t he – and got accused of having blood transfusions before each major race – then got diagnosed with cancer. How vey ironic ! Are they planning a bone marrow transplant for you or is it wait and see ?

We have a different numbering system for hgb levels so am having difficulty working out the comparisons – mine were 91 when I was first diagnosed – went up to 104 after last transfusion and are now back down to 95. They don’t offer a transfusion until I am down in the low 90’s but I always start feeling like I need one at about 96 – so am feeling like some blood now !!!! If anyone knows the 2 systems that describe levels that would be great so I can then make the comparison.

Pity they don’t have the facility on here for photos – It would be nice to see people as well as talk

Cathie

[celebrations]

Hi Cathie,
with the two systems of HGB it is as simple as that, just put a point in between…
96 makes 9.6 etc.
I have been receiving my 24th transfusion so far last thursday with an hgb of 8.8.
Good luck, Bergit from Germany

[Laural]

Hi Cathie,
I have used Exjade recently to get iron down. Currently am not on anything as transfusions have been more infrequent. My prognosis is not good, but I have long ago learned to look past the prognosis, and try to stay focused on the moment. Right now there are no trials that I qualify for beyond bone marrow transplant. Clofarabine may be an option if the blasts jump again as it was effective in the past. I have avoided the bone marrow option, and will continue to avoid it, as long as possible as the long term outlook is not good and there are so many complications inherent in the process.
My girls are 13 and 15. I also have a 17 year old son. They have grown up with this disease and are great advocates for research. You can see our team pic at http://pages.lightthenight.org/soh/Dayton09/AlwaysFriends as well as the links to our individual pages.

[Zoe]

Cathie,

My little granddaughter is doing well. Still in ICU, but she is breathing without oxygen and is maintaining her body heat without a lamp. Once she starts eating well consistantly, they will take her off the monitors and look at sending her home. I am expecting that within a week or less even. YIPPEE! She is my third. I have a 3 year old girl, a 1 year old boy, and now a newborn girl. They are so precious!

Yes, Lance Armstrong won the Tour de France 7 times at least–my son thinks it was 8. I made a sign thanking the riders as a James Cancer Center patient and sat outside and watched all day. It was fun watching their reactions when they saw my sign. Many smiled, raised a victory fist, or even whooped. Several said thanks for doing the sign. I was totally impressed they could talk at all (by the time they got to my house they had biked over 70 miles in one day!). At that point I would be panting with no voice left :^) if I could even move anymore.

I am just doing the Aranesp, no other treatment planned as long as it keeps working. We were flooded a few months ago and I was 3 days late on my shot. My hgb dropped 1 gram, then went back up after I got back on schedule, so I know they are making a difference for me. My vitamins help too.

Zoe

[Mary4Mike]

Birgit,

Are you still doing the Valproic Acid and are you still TX free? What is the regimen for valproic and what were/are your side effects?

Thanks in advance,
Mary

[ltlgiant]

I noted your high incidence of blood transfusions and had to write you. I have attended about 7 MDS Patient Forums and I learn from evryone of them. You should attend if possible. I will go to my next one next week. What I learned regarding blood transfusions is discussed in my video posted on the MDS-Foundation website. You might view it and learn too. Just click on the "Links" link (lower left on home page) and see the three (3) parts links an the lower right side of the page. Part 3 is an interview of a patient. It has some bad background voices but I decided to use it as the message is more important. If you find it helpful, I ask that you tell me if it was worth viewing.

Good luck with your treatments.

Ray

[Laural]

Hi Ray,
I watched your videos…they are a good overview of this disease and would be very helpful to a newly diagnosed patient. As I have had so many transfusions over the years, I have had to resort to specific donors. This assures that my chances of reaction are minimized and blood is fresh. I also use irradiated and filtered blood. You are right when you say you must sometimes demand this. When I travel, I carry a note from my physician stating this need should I need to get transfused. I have tried to schedule in a Forum from time to time when they are closer to me, but my work schedule often gets in the way. I do keep a close eye on updates, both on this website and at the AA/MDS website. The internet has become a huge help in keeping up with new trials. Thanks.

[ltlgiant]

Hi Laural.. I may start exjade soon as my iron has increased after I received 100+ treatments of Vidaza. Are there any side effects? What may I expect? For some reason my blood sugar has jumped too. Anything you can offer will be appreciated. Good luck with your life journey. You may find my videos on MDS found by clicking "links" on the MDS-Foundation Homepage, lower left. Then lower right are 3 Parts. The last is not the best when I interviewed another patient in a room where people were talking in the background. Content was important so I went with it anyway. Tell me what you think. Ray

[maggiemag]

Hi Katydid! I am back from vacation, and feeling ok. My h and h are still relatively stable and have not yet needed a tx. I am still on watch and wait so that is what I will have to live with from now on; CBC to CBC and BMB to BMB. Life goes on……….!

Oh, I forgot to mention that I got another opinion from the Hutch in Seattle. One of my sons lives there and the airfare went down 50% so I made res and thought I would go see someone at the Hutch. They asked for my records and then told me that they would not do anything different at this point. There are no trials that I would qualify for at this point. I didn’t even have to see them, since my trip is in October ;-), they just reviewed all my records. But still, it is reassuring that my heme would be on the same page as the world-renowned people.

Mags

[katydid]

Hey Mags – how fabulous to hear from you at last – Laurie and I have been on here trying to keep the side up !! we have been joined I am pleased to say by the lovely Zoe and Birgite and by Ray of video fame ( – Birgite – sorry I haven’t responded to your very helpful post but sooo good to have you here ) . I am really exhausted at the moment – just struggling day to day – have a hospital appt next week – I think they are going to schedule my next bm byopsy ( which I really hate !! ) feeling grumpy and down – appetite odd and resilience levels – emotional and psychological – not good. Funny when I get like this that I find it a 2 way thing – I start to have visions of grandeur !!! – what we can do , where to next – all the great possibilities that abound in this world, and conversely – like I just really want to go to bed and stay there and never have to get up again. Hopefully I am having a transfusion next week – I start to feel like I need one at about 9.5 ( tragic I know – not very staunch am I !!?? ) but then is when I start to spiral down so then is when I want have one. Oh well – such is life and mds – mags, laurie, birgit, zoe – really wanting to know how you all are
cathie xx

Ps Mags – what is cbc ???

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