Yes! Blood levels have remained largely constant. White cell count is down a bit more but not that significantly. If things continue at this rate, I should be in good shape until the transplant.
Have another appointment on June 1st for another check.
Wednesday, May 18, 2011
Tuesday, May 17, 2011
Notice received from the Dana Farber Search Coordinator
The Dana Farber Search coordinator has requested that a donor (21 year old male) donate a blood sample and be evaluated to donate in July making my potential admission date July 8th.
Dana Farber will be in touch a bit closer to get additional testing, consents, teaching, etc.
Hope this date pans out.
I want to get this over soonest.
Wednesday, May 11, 2011
More match news from Dana Farber
The coordinator at Dana Farber reports that my other sister, Erin, also is not a match.
On the upside, a search of thr marrow donor database shows over 400 possible matched.
I guess they will now start reaching out to these people to have follow-on blood typing done to confirm the match and such.
The goal is still to get the transplant done in June or July.
On the upside, a search of thr marrow donor database shows over 400 possible matched.
I guess they will now start reaching out to these people to have follow-on blood typing done to confirm the match and such.
The goal is still to get the transplant done in June or July.
Tuesday, May 3, 2011
Inched a little closer to a stem cell transplant today - good news!
Should Erin not come up as a match, we have options.
The coordinator at Dana Farber did a database search and found viable first pass matches.
These donors would still need to do a blood typing to get a confirmation but this is definitely good news.
The coordinator at Dana Farber did a database search and found viable first pass matches.
These donors would still need to do a blood typing to get a confirmation but this is definitely good news.
Monday, May 2, 2011
Post doctors visit results
Todays doctor visit was a mixed bag of results.
My levels are holding steady or only slightly declining which means no Vidaza for now. This is good news because the side-effects of it are pretty nasty.
Down side is we need to wait for results for Erin. Failing that match, we need to go to the unrelated donor database. I reiterated to the doctor that I really want to get this rolling for June/July so it would be great if they did the database checks now.
They prefer to use a related match whenever possible so as to gain factors in the blood they may not be measuring against which is why they are not going straight to the database.
Another appointment is scheduled for two weeks. Hopefully I will know more then.
First round of bad news
Heard from Dana Farber and my youngest sister Megan is only a partial match. Hoping Erin's test works out better else we will need to search the unrelated donor database.
Sunday, May 1, 2011
Another visit with the oncologist on Monday and dentist on Tuesday
Well that will be fun. More blood drawn as usual and another check of the dropping levels. Hope it isn't too bad. Kind of want to avoid taking Vidaxa but am reconsidering. My energy levels are in the toilet. Just doing some basic housework for spring cleaning wipes me out.Also, the aches and pains are always present. Maybe getting on the meds will slow progression of the disease. Something to discuss.
Tuesday I need to see my dentist for a thorough exam and full mouth x-rays. The exam is to ensure I have no infections or underlying problems prior to my undergoing chemo.The chemo causes sores of the mouth and a lot of excess saliva among other pleasantness.
Tuesday I need to see my dentist for a thorough exam and full mouth x-rays. The exam is to ensure I have no infections or underlying problems prior to my undergoing chemo.The chemo causes sores of the mouth and a lot of excess saliva among other pleasantness.
Sunday, April 17, 2011
Tired .. really tired
It is getting really tough to deal with the complete lack of energy.
Even after sleeping a full night, it is like you are moving up hill through molasses. Weird.
Climbing the stairs is exhausting and even something simple like shaving the head is now a chore.
Things still need to get done around the house so time to suck it up and just deal with it.
Thursday, April 14, 2011
Pain .. its whats for dinner
and breakfast, and lunch.
What started my even getting diagnosed with MDS was I thought I had arthritis. Getting older I guess but best to check it out. The counts alarmed my primary care and off we started into the wonderful world of oncology.
Every time I would go in to see the oncologist, Id say "my hands really hurt and it is now in place X" or "it is still in my hands but it is now moving between X and Y".
We went through a good part of the alphabet of places before I was finally given something to help control it. The best way to describe the pain is like a really bad tooth ache combined with something trying to burst out of your joints. The movie "Aliens" comes to mind.
I stll get woken up from the pain and it takes forever for the meds to kick in but it is sort of easing somewhat. Discovered I need to shift the times when i take the pills so they last through the night. Last night was not a pleasant experience.. We found place H (the hips) and place K (the knees) along with the usual fingers (F?). Not good last night at all.
What started my even getting diagnosed with MDS was I thought I had arthritis. Getting older I guess but best to check it out. The counts alarmed my primary care and off we started into the wonderful world of oncology.
Every time I would go in to see the oncologist, Id say "my hands really hurt and it is now in place X" or "it is still in my hands but it is now moving between X and Y".
We went through a good part of the alphabet of places before I was finally given something to help control it. The best way to describe the pain is like a really bad tooth ache combined with something trying to burst out of your joints. The movie "Aliens" comes to mind.
I stll get woken up from the pain and it takes forever for the meds to kick in but it is sort of easing somewhat. Discovered I need to shift the times when i take the pills so they last through the night. Last night was not a pleasant experience.. We found place H (the hips) and place K (the knees) along with the usual fingers (F?). Not good last night at all.
Tuesday, April 12, 2011
Dana Farber visit update
The visits I had today were to confirm diagnosis and determine choices/options.
The specialist states that my MDS will likely turn into acute leukemia within 2 years.
I can be given low level chemo drugs like Vidaxa to help keep my current counts relatively stable but it is a short term solution at best. Eventually the disease will overcome the benefits of the chemo then a match is a must. Also, the drugs dont work for everyone so who knows.
We are still determining whether to take the drug route. It will depend on how long it takes to find a match.
If a match is found soon, there isn't much of a need to do the Vidaxa.
Once a match is determined, I will be in the hospital for about 40 days between the chemo to kill all bone marrow, do the transplant, and recovery.
I go home after that but am effectively in isolation for a year because the immune system needs to rebuild.
Hopefully my work will allow me to work from home during this period.
Long day today.
The specialist states that my MDS will likely turn into acute leukemia within 2 years.
I can be given low level chemo drugs like Vidaxa to help keep my current counts relatively stable but it is a short term solution at best. Eventually the disease will overcome the benefits of the chemo then a match is a must. Also, the drugs dont work for everyone so who knows.
We are still determining whether to take the drug route. It will depend on how long it takes to find a match.
If a match is found soon, there isn't much of a need to do the Vidaxa.
Once a match is determined, I will be in the hospital for about 40 days between the chemo to kill all bone marrow, do the transplant, and recovery.
I go home after that but am effectively in isolation for a year because the immune system needs to rebuild.
Hopefully my work will allow me to work from home during this period.
Long day today.
Thursday, April 7, 2011
Wednesday, April 6, 2011
For anyone who wants it - a book on MDS
Call Audrey Hassan at the MDS Foundation (800) MDS-0839. Ask her to send you the book "100 Questions & Answers About Myelodysplastic Syndromes" By Jason Gotlib, MD, MS & Lenn Fetcher, RN, BSN.
Tuesday, April 5, 2011
Why CT scans and Oprah were never meant to be mixed.
Well that was special.
Chug down two bottles of a barium mix and wait.. for an hour.
I understand the reason for the wait but did they really have to force feed me Oprah babbling about and with soap stars?
Oprah. No means no!
Stomach is doing somersaults. Hope it is just the barium doing it.
Chug down two bottles of a barium mix and wait.. for an hour.
I understand the reason for the wait but did they really have to force feed me Oprah babbling about and with soap stars?
Oprah. No means no!
Stomach is doing somersaults. Hope it is just the barium doing it.
What MDS is.. and is not.. a good FAQ
Finally.. A concise breakdown on MDS.
Lots out there from Google searches but this puts everything into a nice summary.
http://www.marrowforums.org/mds.html
Lots out there from Google searches but this puts everything into a nice summary.
http://www.marrowforums.org/mds.html
New to MDS.. Knowing what questions to ask
One of the things I am most concerned about is in asking the right questions. The doctors are not exactly hiding things but they don't want to overwhelm with detail either. One of the message board members pointed me to the following list of questions to ask. Going to use this for sure!
A friend also mentioned keeping a notebook for any questions/answers you might have. I think this is a great idea.
A friend also mentioned keeping a notebook for any questions/answers you might have. I think this is a great idea.
CT scan today
I will be getting the CT scan today. This is to check for spleen enlargement and possible problems with the liver. There is a concern that there could be retention of iron which is a typical response from MDS. Hope, but don't expect, to hear something today. I most likely will get the results next week from either my current oncologist or the new one I am seeing at Dana Farber.
Sunday, April 3, 2011
Benzine and jet fuel
I've been doing some web searches and there is no reported evidence that exposure to JP-4 can cause long term health problems.
I have had had direct skin exposure to the fuel and breathed it in as jet exhaust.
How there can possibly be no link?
The very same searches say that exposure to 100 parts per million can cause problems.
Will be investigating this further as part of the seminar on May 14th.
There is a specific talk for veterans.
I have had had direct skin exposure to the fuel and breathed it in as jet exhaust.
How there can possibly be no link?
The very same searches say that exposure to 100 parts per million can cause problems.
Will be investigating this further as part of the seminar on May 14th.
There is a specific talk for veterans.
Saturday, April 2, 2011
Attending Living with Aplastic Anemia, MDS or PNH on May 14th
WHEN:
Saturday, May 14, 2011
8:30 am – 5:00 pm
NOTE: On-site check-in will begin at 7:30 am. Breakfast and lunch are complimentary for registrants.
WHERE:
Westin Waltham-Boston
70 Third Avenue
Waltham, MA 02451
(781) 290-5600
http://boston2011.aamds.org/Markslist/donorpro/displaySite.do?siteIdCode=4HPPZNW0
Saturday, May 14, 2011
8:30 am – 5:00 pm
NOTE: On-site check-in will begin at 7:30 am. Breakfast and lunch are complimentary for registrants.
WHERE:
Westin Waltham-Boston
70 Third Avenue
Waltham, MA 02451
(781) 290-5600
http://boston2011.aamds.org/Markslist/donorpro/displaySite.do?siteIdCode=4HPPZNW0
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