I'm so afraid.

[kiltie]

I am a colonrectal cancer survivor of almost 5 years. I had radiation and Chemo. Last year it was noted that my WBC was elevated at 14 and I was showing as having macrocytic anemia with a hemoglobin of 11.1. I was diagnosed as having CLL (given cyto test) and told "don’t worry this is at a very early stage you could live for years"
On my last visit for my hemo/oncologist my WBC count has risen to 18 and my hemoglobin had dropped to 8.8. My oncologist is now saying that given my past chemo/radiation in all probabilities I have MDS.
I am so scared, on searching the internet I see that MDS caused by Chemo/radiation does not have a good prognosis.

The hemo/oncologist is head of department at a teaching research hospital, so I am in "good" hands. I am a nervous wreck and would like to hear of anyone who has is dealing with MDS chemo/radiation induced.

[Mary4Mike]

Kiltie,
My husband did not have chemo/radiation prior to his diagnosis. They really don’t know how he acquired it as many on this forum have stated in past threads. We had a thread going quite a while ago trying to find a common experience/exposure to link this MDS diagnosis.
Have your doctors offered any type of treatment? Are they talking transplant?
Please give us more information about your situation.

In the meantime, please lets hear from some of you MDS people with secondary MDS. What have your doc said to you about the difference in prognosis of one with primary MDS?

It sounds like you are associated with a good institution. Is it in Canada or the states? A teaching/researching hospital is always good……they know the latest and they are doing clinical studies.

Give us more info and keep your chin up! With transfusions and complimentary treatments, etc people can live a long time with MDS. With a transplant, you can be cured.

Keep in touch!

Mary

[kiltie]

Mary: Thank you so much for your kind words. I live in Canada. I am "lucky" to live in Kingston Ontario. Kingston Hospital is affiliated with Queen’s University and my Doctor (hemo/oncologist) is Head of Hemo and a full Professor.

I do not have any "details" on my condition. I saw my Doctor and he made an appointment to see me in 1 month (8th September). I do know that my white cell count is elevated, it has been elevated for almost 2 years hence the diagnosais of CLL. However on this visit it was also noted that my RBC/hemoglobin was considerably lower, leading the Doc to think that this is not your common variety of CLL.

My kidneys are not in "great shape" with a creatine level of 180. My levels have stayed constant at 118 (mild disease) for 2 years.

I was told "probably" MDS……and given the experience and qualifications of my Doc I have prepared myself for the worst.

I am 64 and have no siblings…so transplant is not in my future. Interestingly enough my Doctor is an "expert" in BMT and SCT and has had great success.

I did ask if he wanted to do a Bone marrow biopsy and he said "not really", lets wait and see what happens in a month.

I feel "fine" ……stressed to the Max….but otherwise just the normal aches and pains of age and prior chemo damage.

[Mary4Mike]

Kiltie,

Do you assume no transplant because of age or no siblings? If it is age, my husband had a transplant last year at the age of 64 and he is doing great! As far as siblings, they could always run your info through the marrow donor program and even come up with a perfect match albeit not related. I am sure that you are stressed because not knowing all the details is often worse than knowing them!

How do you feel with a HGB of 8.8? Short of breath, legs feel heavy and low energy? They could always try Procrit or Aranesp. Have they mentioned transfusion? I am sure that you have looked all this up on the internet, but a lot of the stats out there are old and every case really is individual.

Keep in touch and take a deep breath !!

God Bless,
Mary

[kiltie]

Thanks Mary, I have been doing way too much "googling" on the internet and getting myself really upset. I’m thinking the "worst possible".

I don’t feel "sick"….I’m a little tired, but that could be all the stress I’m puting myself through.

I really do appreciate your concern,
thank you.

[kiltie]

Just got a call from my hemo/oncologist and my appointment has been re-scheduled to 22nd September. I had myself "psyched" for my appointment on 8th September now I am back in a "holding pattern". My nerves are "shot"!!
I’m trying to put a "positive spin" in this…I can’t be in too much "trouble" or they would have sent me to another hemotologist.

[Mary4Mike]

What reason did they give…doctor going to be out of town?…etc????? If it was urgent, I would think that they would have set you up with another doc.

Take a deep breath and enjoy your weekend. Don’t fret about things you don’t even know about and when you do have your appointment and learn things, worrying won’t help a bit. One day at a time…….

[kiltie]

Hi Mary, I was told that there was a death in the family. I’m thinking "my case can’t be URGENT…they would have assigned me to an "underling" as my hemo/onc is Head of Department.

Anyhoo…..hope does spring eternal.

[kiltie]

Here is the latest in medical information.

Oncologist says that my hemoglobin has gone up a little bit to 9.9 and this is a good thing because it shows that my bone marrow is working (not great but working), White cell count is elevated at 21 but this is caused by Chronic Lymph Leukemia and is not at a PANIC level. He says that I still have Leukemia with some MDS (caused by Chemo/radiation)….. however, at the moment I appear to have ‘STABLE DISEASE".

He wanted to see me again in 3 months….I mentioned that I want to go to Florida and he said "I’ll see you in 6 weeks". If I am still STABLE I can get blood work done in Florida and FAX it to him.

So as far as I am concerned…………….this is great I can handle STABLE.

[Smurf]

Hi Kiltie,

I know how you feel about being afraid, I am too.

I also live in Kington, Ontario and I deal with a hematologist who works at the Kingston General Hospital was well.

I went for blood work back in 2001 and it was notice then that my counts were low, so they decided to do a bone marrow biospy, which it came back alright, but they alluded to the fact that it could someday go into MDS.

I have since be referred back to my hematologist as my counts have dropped lower then usual, so my GP is just airing on the side of caution. I’m hoping everything will continue to stay stable, because I’m not sure about treatments for this disease.

It’s nice to know that there is someone right in the same city, mostly everyone on her are in the States or UK.

[kiltie]

Hi I’m happy to meet a fellow Kingstonian. I have Dr. Matthews as my Hemotologist. At first I didn’t really like him because he didn’t seem to take time to talk to me. However, at my last appointment he was "great", and he was very reassuring that things were not as bad as I had envisioned.
He laughed at the form we fill out asking "How do you feel, are you anxious, etc etc……told him I would be considered "Brain dead" if I wasn’t anxious I’m in the Cancer Clinic.
Dr. Matthews is Head of Hemo Department. Who do you have as your hemotologist?

[Mary4Mike]

Kiltie,

Glad to hear that you are stable.

Where in Florida do you go? We have done the Florida doctoring thing for years and it has worked well. Also, had to go in the hospital while there. We go to Naples and use Florida Cancer Specialists.

[kiltie]

Now isn’t that a a coincidence………we have a place in Naples. Love it there. Being Canadian I will not be getting any "active" treatment in Florida. My insurance only covers "emergency care" fortunately at 100% coverage. I will get blood work done when I am in Naples at a diagnostic centre and I will have to pay for it. I was surprised to see that I can get a CBC done for around $30 so I will not be too much out of pocket. If my numbers start to move up I will have to come back to Canada. It is only a 3 hour flight to Canada from Fort Myers airport.

We plan to be in Naples mid November and back to Canada mid April……we miss all the cold and snow in Canada yippee

[Mary4Mike]

Small world, isn’t it?

[Lori Patrick 14]

I was diagnosed with MDS – RAEB-II (15% blasts) yesterday. My cytojenetics are perfect?? (46XX). I am new to this and am wanting all the support and information I can get. I go in next Wednesday for a 4-6 week hospital stay to include 7 days of induction chemotherapy. My brother is being checked for a match for stem cell transplant which I think occurs sometime after I recover (if I do) from the chemo. My doc says this can be cured but I read on the web that it cannot. Will be nice to hear/read others’ information on this site.

God is Good. Lori

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