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  #1  
Old Mon Sep 4, 2017, 02:54 AM
jmarshall23 jmarshall23 is offline
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Grandpa got diagnosed with MDS

Hey everyone,

First I wanted to say thank you to everyone for creating such a great community. My grandpa got diagnosed with MDS early this year. He is 89 years old. I'm not sure what type of MDS he has, and I'm hoping I can get some more information based on what little I know(my mom is taking the lead on his care, but she isn't asking a lot of detailed questions, like what kind of MDS does he have).

As I said my grandpa got diagosed with MDS early this year. He just got a blood transfusion last Friday, and the transfusion before that was around the end of June(so he's basically gone 8 weeks without a transfusion). During the past couple of weeks, when his blood levels have been between 8 and 9, he has felt really bad. I also know he has low platlets, red blood cells, and white blood cells(although I think this might be caused by the immosuppressed shots he's getting). i don't know his blast count, I know in all of his blood tests, they have the blast count listed as DNR.

So my question is, based on that little bit of information, does anyone know how long he has? I love my grandpa and it scares me that I'm going to loose him. Also I've been reading articles saying that bone marrow transfusions shouldn't be excluded because of age. Is that true?

Here is another question. If there is some level of a chance that a bone marrow transfusion can save his life, wouldn't it be worth while to try it?

Anyway thank you guys for the great forum(sounds cliche but really thank you guys).

-Justin
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  #2  
Old Mon Sep 4, 2017, 09:46 AM
Callie Callie is offline
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Good morning! As with all of us on here, I am so sorry you had to find us and that your Grandpa and family are experiencing this. However, we welcome you and welcome any questions you might have! I am most definitely not a doctor, but a caregiver. What you'll find is knowledge is key to asking the right questions, but each patient is so different from the next. What works for one may or may not work for another. The type of MDS will be important to find out. With that being said, my dad's prognosis was bleak - 6 months maybe without treatment (RAEB II, numbers declining very quickly) and we didn't know if any of the courses of treatment would work. Fortunately they did and he lived a good life for the next 3 1/2+ years (still way too short...).

He was 67 at the time, with transplant at 68. RAR (another member) was several years older than that. Age isn't a final factor, but doctors may feel 89 to be too old (I could be wrong, though!). Other factors come into play - overall health (i.e., diabetes, heart function, etc.), disease progression at the time, etc. You mention immunosuppressant shots. Is he receiving azacitidine (Vidaza) shots? If so, yes - they can cause the blood numbers to decrease before they start working (generally takes several cycles).

We all wish you the best. Please feel free to ask any questions that might arise.

Callie
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  #3  
Old Mon Sep 4, 2017, 10:33 AM
jmarshall23 jmarshall23 is offline
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Quote:
Originally Posted by Callie View Post
With that being said, my dad's prognosis was bleak - 6 months maybe without treatment (RAEB II, numbers declining very quickly) and we didn't know if any of the courses of treatment would work. Fortunately they did and he lived a good life for the next 3 1/2+ years (still way too short...).
I'm really sorry to hear about your dad. If I may ask, what kind of activities did you guys do(I really hope I'm not being too direct, if I am I'm really really sorry). The reason I ask is, my grandpa was always a high energy guy, and this disease has taken his energy down(especially when his hemoglobin is between 8 and 9), and I'm trying to find things for us to do so I can make the rest of his life as best as I can make it.

Quote:
You mention immunosuppressant shots. Is he receiving azacitidine (Vidaza) shots? If so, yes - they can cause the blood numbers to decrease before they start working (generally takes several cycles).
The only thing I know is they are immosuppressant shots and they cost about $1000 a shot. I probably should see if I can get his blood work results before he started taking the shots.

I just wish I could do more. This might seem like a obvious question but is it a good sign that he can go 8 weeks between transfusions? I've been reading a lot and towards the end stages of the disease, people see to have to get transfusions as early as 3-8 days(if it even works). Because he's getting transfusions in seemingly 8 week intervals, can I assume he still has awhile to go?

My grandpa wants to get more frequent transfusions(especially when his hemoglobin falls below 9), is it safe to get more frequent transfusions(even if your hemoglobin is above 8?). I've been reading about iron build up from too many transfusions, but his quality of life goes up when he gets the transfusions(like he can actually drive and walk around).
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  #4  
Old Mon Sep 4, 2017, 12:56 PM
Callie Callie is offline
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Dad was always very active until the last 8 months - golf, driving cross country with me and my animals, projects around the house, etc. (in fact, he was planning on coming out here this summer to build a deck on my house). While he definitely experienced more fatigue after transplant (everyone finds their "new normal"), he was still able to do all of those things. Last October, he started having pain in his shoulder, then it moved to his hips. It became more frequent and more intense as time went on (we couldn't find the source/reason, but he also wouldn't tell the doctors just how bad he felt, so they really didn't start with the MRIs, PETscan, xrays until the beginning of April, at the same time his numbers started plummeting and blasts increased). It was this pain that started preventing him from doing things, not low blood numbers. He never needed any transfusions (except for one platelet transfusion during transplant) until he went in for induction chemo for AML relapse in April, at which time he started receiving transfusions regularly, as we hoped his body would start producing on its own. He noticed he felt significantly more tired when his platelets were low and his hemoglobin dropped below 10 (many seem to feel okay down to 8ish). During the first 100 days after transplant, when we were living in the apartment near the hospital, we played a lot of cards and went on short walks.

I wish I could help you more than this! This forum became such a huge part of my dad's and my life over this time. It's full of incredibly knowledgeable people going through similar situations.
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  #5  
Old Tue Sep 5, 2017, 07:37 AM
jmarshall23 jmarshall23 is offline
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I agree this forum is a fantastic forum! On my grandpa's paperwork he has RAEB(doesn't list 1 or 2). He got a transfusion on Friday of last week(three days ago), but hasn't felt completely better yet. All of his pain has gone away, but he's still very tired. Does that mean the transfusion isn't working?

Also I've been reading a lot on the disease, and most people say they have a elevated MCV value in a CBC test. My grandpa has a normal MCV value(86.2). Does that mean anything?
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  #6  
Old Tue Sep 5, 2017, 08:37 PM
rar rar is offline
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Old RAR is still alive and kicking at 3+ years after transplant at age 73. My answers are blunt and not empathetic. For MDS RAEB1 mean life expectancy is a year and a half, if it 2 like I had it drops to 5 months. Keep in mind this is the mean and can be much longer or shorter.

Only about 10% of MDS sufferers get a transplant because it is a risky and physically demanding procedure. I was in good shape, in my late 60's I went to the bottom of the Grand Canyon and back as a day trip (walking, not on the back of some poor animal). Unless your grandpa is in extraordinary condition a transplant is probably out of the question.

I am completely cured. All my blood tests come out normal. Doctor said I was his star example of a success stoory, and he doesn't see too many of those. Life is not a bowl of cherries. GVHD still rears it's ugly head. On my last visit I was telling my doctor about lack of energy. He asked If I was looking for what I had at 40. I said no, I would settle for 73. The transplant was the right answer for me and I would do it all over again if given the choice.

The best that you can do is to make the next year the best of grandpa's entire life.

Ray
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  #7  
Old Tue Sep 5, 2017, 11:21 PM
jmarshall23 jmarshall23 is offline
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Quote:
Originally Posted by rar View Post
My answers are blunt and not empathetic.
I really appreciate your candid response. I really thank you for taking the time to respond to my post. I'm not here for sugar coding. I'm here to figure out if there are any other options left, and how I can make the best out of the time I have left with my grandpa.

I'm trying to look objectively at the situation and figure out what to do. Do you guys think its worth while to get a second opinion? My grandpa is a fighter, his will to survive has not been diminished by his condition. Hypothetically, if we could find a doctor and bone marrow donor for him, what are his odds of survival? 20% 30%? I can't find many studies on this, besides the studies that say, age isn't a factor when determining if a patient can get a transplant. Obviously more factors are at play here, but hypothetically, what would his survival chances be(even if its just a extension of life).

Also is it possible for some blood donations to give more of a hemoglobin boost then others? I know that's a vague question, but the latest round of blood transfusion didn't give him as much of a boost as the last one did. His pain is gone but his energy levels aren't as they were. Is it possible the donor blood he got this time around wasn't as good as the previous donor blood he got 8 weeks ago?
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  #8  
Old Wed Sep 6, 2017, 11:22 AM
Hopeful Hopeful is offline
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Hi Justin,

I am a big believer in second opinions. Make sure your grandpa is seen at an MDS Center for Excellence. Be sure to get a copy of all of his previous labs and BMB report. It is helpful to track the trends of his HGB/platelets/ANC in a spreadsheet. Go with him to the appointment if you can.

How many bags of blood is your grandpa getting per transfusions? How much of a boost is he getting from the transfusion?

Was your grandpa's MDS diagnosis based on a BMB? Has he been tested for B-12, folate, and other vitamin/mineral deficiencies?

When your HGB is between 8-9, you feel tired all the time - both mentally and physically. I remember waking up and feeling exhausted after 10 hours of sleep! Eventually, the body will adjust to the lower HGB, and he won't feel as bad, but he will still be tired.

Is your grandpa still getting shots? Are they Vidaza shots? This is an important thing to find out. If he is, all the research that I have heard is that you don't want to stop them prematurely! If the Vidaza works, his counts could improve and he could have a very good quality of life for a few years. Quality of life is very important here.

Getting frequent transfusion will eventually cause iron overload issues. Get that second opinion and talk over the options with another doctor, if only for the different perspective.

Kind regards!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #9  
Old Wed Sep 6, 2017, 12:18 PM
jmarshall23 jmarshall23 is offline
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I just wanted to thank everyone again for taking the time to respond to my questions. You guys have no idea who I am, and I feel blessed that you guys are taking the time to talk with me. I hope I can be just as much as of a help to you guys in the future.

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Originally Posted by Hopeful View Post
It is helpful to track the trends of his HGB/platelets/ANC in a spreadsheet.
Great idea! I'll start a spreadsheet tonight.

Quote:
Originally Posted by Hopeful View Post
Go with him to the appointment if you can.
I would love to go with him to his appointments. My grandparents don't want me to go. My grandpa doesn't want me to see him when he's this weak. I've been coming over on the weekends with home cooked food(that's my way in the door :P). I've yet to break the barrier to go with him to his appointments. If you guys have any words of wisdom for me on this one, I would love to hear them.

Quote:
Originally Posted by Hopeful View Post
How many bags of blood is your grandpa getting per transfusions? How much of a boost is he getting from the transfusion?
I don't know how many bags of blood he's getting. He's only had 3 transfusions(including the latest one). The transfusion he got before this lasted him 8 weeks. The boost he got was almost to 11. The hemoglobin didn't fall to below 8(the latest blood test had him at 8.1), but he wanted the transfusion because he couldn't get through the day.

Quote:
Originally Posted by Hopeful View Post
Was your grandpa's MDS diagnosis based on a BMB? Has he been tested for B-12, folate, and other vitamin/mineral deficiencies?
This is where things get interesting. In January of this year he complained of having low energy and he went to the hospital and doctors office 4 or 5 times before getting diagnosed with MDS RAEB. He wasn't diagnosed until May. They did a bone marrow biopsy and after that they diagnosed him with MDS.

In July they gave him a B12 shot(after my grandmother repeatedly asked the doctor), and his hemoglobin did go up after the shot. They haven't given him another shot since(even though my grandmother has been continually asking the doctor for another b12 shot for him).

Is it still possible that this is a b12 deficiency issue?

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Originally Posted by Hopeful View Post
Is your grandpa still getting shots? Are they Vidaza shots?
They are giving him Procrit shots. Do you guys think Vidaza is better then Procrit?
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  #10  
Old Wed Sep 6, 2017, 01:49 PM
JordanN JordanN is offline
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Hi, Justin,

Like everyone else here, I'm glad to meet you but sorry you had to find us here. Your grandfather sounds like a really fun and positive person, and I am sure that will go a long way toward him handling this diagnosis well.

My dad was 80 and an extremely healthy and active person when he was diagnosed with MDS RAEB 2 and was told that though age is not strictly a factor when determining eligibility for a transplant the reality is very very few people over 80 get one. It was not even offered as a possibility for my dad. In fairness, I'm not sure my dad would have wanted it if it was offered as the transplant process is quite intense.

As far as transfusions go, every bag of blood is not exactly the same (some are closer to expiration dates, some have slightly less volume, etc) so you will see some variation in how much your grandpa responds to each transfusion. My dad required transfusions for the entire course of is illness at a rate of about 1 to 2 units every two weeks (in general, one bag or one unit of red cells raises your Hgb about 1 point). We did notice that in the last few months, he didn't seem to get as much of a boost after his transfusions as he did in the beginning of his illness. My dad was never able to do the activities he did prior to MDS, but we found many ways to bring fun things to him rather than going out to be active (football tailgate parties in front of the TV, take out from favorite restaurants with close friends, setting up projects for woodworking for him so he could just do the actual woodworking, etc).

Vidaza is a type of chemotherapy used to treat MDS. It is usually given for 7 days via IV infusion or a shot followed by 21 days of no shots or infusions. The hemotologist or oncologist will determine if your grandpa's MDS would be best treated this way rather than a transplant or "watch and wait". Many patients have done some combination of all of these treatment options depending on how their disease is behaving at the moment. In the best cases, Vidaza can raise blood values like Hgb, white cells, and platelets and decrease the blast count in the bone marrow. While my dad did not experience this, we do believe the Vidaza kept his MDS at bay for awhile and was not a difficult treatment to go through as far as side effects, fatigue, etc.
His initial prognosis was 4 to 5 months and he survived for 20 months with only the very last month being uncomfortable.

I wish you all the best in dealing with this disease. It is a shock at first and very confusing, but everyone finds a way to handle it and your grandpa's great attitude and your obvious love for him will make it much easier.
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  #11  
Old Wed Sep 6, 2017, 09:41 PM
Callie Callie is offline
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Everyone who has replied has given you great information! A couple things from my experience...if they don't want you to go to the appointments, maybe you can get them a good tape recorder to take. It's amazing (especially in the beginning when all of this new and beyond awful) how many words medical words will be completely new and foreign, and two people will hear/get different things from the appointments. Having them recorded at least gives them/you the ability to research the jargon afterwards, enabling everyone to ask the right questions later. Depending on how open he is with discussing the appointments and/or your research, you may present various questions for him to ask himself. Is he fairly open about the illness and wanting to learn (many people, honestly, don't want to know and just want the doctors to guide them through the process...my dad was a researcher and wanted to be fully informed, as most people on this forum do. It helped us navigate the 3 1/2 years so much better, and as I've mentioned in other posts, I believe his tenacity helped his doctors provide the best treatment for him.)?

Next, I believe Procrit is used to stimulate red blood cell growth (Dad never received Procrit, though, so I can't speak too intelligently on it), whereas Vidaza is more to decrease the blasts. In many cases, Vidaza is used as a bridge to transplant (I believe the preferred magic number of blasts to go to transplant with a hope of success is less than 12%). In others, when transplant is not a viable option and decreasing blasts is of importance, Vidaza (azacitidine) or Dacogen (decitabine), are the general treatment choices. As with all treatment, though, for MDS and/or AML, patient responses are unknown and widely varied. Finding a happy medium/optimal time for treatment options is difficult, but important. If your Grandpa's blasts are not above 5%, they may not be considering Vidaza as a necessity yet (Vidaza, for those who respond, is effective for a limited time - what that time period is, no one knows. Can be 4 months for some, 28 cycles as for my dad, or longer for some. Once it becomes ineffective, the disease quickly takes over again...).

As also mentioned by others - a spreadsheet is key!!! Don't get too wrapped up in individual numbers (but be cognizant of them for sure), instead looking at trends. Remember, the doctors don't have all the information in front of them all the time, so your/your grandpa's knowledge of his numbers is very important.

I wouldn't (but again, I'm not a doctor and Dad's issues were never with his reds; others would know better about this than I) be too worried about iron overload at this point (I believe it takes quite a few transfusions before overload becomes a concern?).

And finally, as others have said...at 89, I really don't think transplant is an option. The survival statistics for transplant are fairly dismal (a word I really got tired of reading over the last several years). Dad, at 67, was in really good shape and, fortunately, did very well after transplant - relatively speaking. For him, it was an obvious choice - do it or die. And dying wasn't an option. He really didn't think, though, had he been is any less good of shape that he'd have faired okay (fast forward 3 years...even though he was still in good shape compared to a lot of his friends, he just couldn't make recover from induction chemo - similar to the chemo strength used at transplant...). Transplant is a very, very serious decision. It used to be (and still is in some parts of the world) mid-50s was the cutoff. Now it seems to be mid-70s.

Long story short...doctors will rarely give a time frame/prognosis (in my experience). You'll gather that information from your own research. I've learned to respect that - as soon as they say weeks, a patient will live years; as soon as they say years, a patient will live weeks. Each person is so different than the next, I really do feel for the doctors in deciding treatment options, etc...

Keep asking questions and we'll keep trying to answer. As you've already found, this forum is a lifeline to so many of us. I, too, hope to share and help others (without being too burdensome ) - as soooo many helped us!
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  #12  
Old Thu Sep 7, 2017, 11:18 AM
jmarshall23 jmarshall23 is offline
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On one of the diagnosis sheets, it did say Refractory Anaemia with Excess Blasts. On another sheet it did say unspecified MDS. If he does have RAEB that means his blast count has to be above 5%. Why would the doctor prescribe a shot that stimulates red blood cell production but not attack the blast count?
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Old Thu Sep 7, 2017, 11:54 AM
Callie Callie is offline
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RAEB I is 5-9% blasts. So if he's hovering close to the 5% range, they may want to see how he does on the Procrit first. Also, depending on all of his counts (whites, reds, platelets), Vidaza may not be a great option right now (it can cause the counts to go further down - some will recover from this; some won't. But it takes an average, I believe, of 4 cycles before improvement.)...
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Old Thu Sep 7, 2017, 11:59 AM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by jmarshall23 View Post
I would love to go with him to his appointments. My grandparents don't want me to go. My grandpa doesn't want me to see him when he's this weak. I've been coming over on the weekends with home cooked food(that's my way in the door :P). I've yet to break the barrier to go with him to his appointments. If you guys have any words of wisdom for me on this one, I would love to hear them.
Ultimately, it's his decision, but I know one approach that may encourage him to let you come along: understanding and talking about the nitty gritty details. Demonstrate that you understand the disease and treatment options, know the main terminology, and are aware of the issues and decisions involved in his care. Suggest a list of questions to ask at appointments and ask him about the answers afterwards. He may soon realize that it would be very helpful for him to have you there at appointments, because it's true.

If I was 89 and had a well-intentioned and well-informed grandson monitoring the details of my care, I'd be thrilled to have that help. It may just take an adjustment in thinking for him to realize that it's OK to let his grandson take that role.
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Old Thu Sep 7, 2017, 12:32 PM
jmarshall23 jmarshall23 is offline
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Callie thank you for the great insight and Neil thank you for the idea about the list of questions to ask the doctor.

Would you guys mind vetting my list of questions? I also wanted to post my questions here just in case someone else might benefit from these questions.
  1. What is his bone marrow blast count?
  2. What type of MDS does he have and what is that diagnosis based on?
  3. If the blast count is higher than 7%, why is he on Procrit(which stimulates red blood cell production) rather than Vidaza which would attack his blast count?
  4. On the CBC test results, there isn’t test results for the number of blasts he has in his blood(all CBC blood work has blast count listed as DNR). Is there a reason for not testing the blood for current blast counts?
  5. Is the low white blood cell count caused by the Procrit shots?
  6. What can be done to boost energy levels and boost quality of life? For example, is drinking coffee ok when energy levels are low.

Last edited by jmarshall23 : Thu Sep 7, 2017 at 12:46 PM.
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Old Thu Sep 7, 2017, 08:57 PM
Callie Callie is offline
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All good questions. For #4 - they can run for blasts at the same time as a CBC - known as blasts in the peripheral blood - but I believe it's a separate test from the normal CBC and more accurate reading from a BMB (bone marrow biopsy). Given my dad's history and frequency of CBCs, we never knew why they didn't test this more frequently. A good indicator, though, of blasts increasing is (at first) a rapid decline of platelets and whites, then if the disease has progressed significantly, a rapid increase in whites. #6 - There are several members here who may be able to offer some great advice for this, including naturals herbs/vitamins/etc. (may want to start a separate post so they see this particular question).
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  #17  
Old Thu Sep 7, 2017, 10:13 PM
rar rar is offline
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At my hospital I get blasts if the doctor orders:

CBC WITH MANUAL DIFF IF AUTO FAILS (PERFORMABLE)

YMMV

Ray
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  #18  
Old Fri Sep 8, 2017, 11:39 AM
jmarshall23 jmarshall23 is offline
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Quote:
Originally Posted by Callie View Post
#6 - There are several members here who may be able to offer some great advice for this, including naturals herbs/vitamins/etc. (may want to start a separate post so they see this particular question).
What sub-forum should I post it in?
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Old Fri Sep 8, 2017, 01:41 PM
Hopeful Hopeful is offline
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Hi,

You are receiving a lot of good advice here. I wanted to clarify some points that I made in a previous post.

First, I am not advocating that your grandpa start on Vidaza. I only asked that question because you said that your grandpa was getting a mysterious shot once a month, and I was wondering if that was what it was.

Vidaza is a treatment that you keep in your back pocket when you don't have other options or are considering transplant. Once you start it, you can not stop, and it will alter the course of your disease either positively or negatively.
So unless his doctors are suggesting Vidaza, I wouldn't even bring it up!

Quote:
Originally Posted by jmarshall23 View Post
I would love to go with him to his appointments. My grandparents don't want me to go. My grandpa doesn't want me to see him when he's this weak. I've been coming over on the weekends with home cooked food(that's my way in the door :P). I've yet to break the barrier to go with him to his appointments. If you guys have any words of wisdom for me on this one, I would love to hear them.
It sounds like your grandparents are trying to protect you as they know that you love your grandpa dearly, and he knows that he is not doing well. I would suggest approaching this with your grandmother first. Explain that you have been researching your grandpa's condition and that you only want to serve as a patient advocate for them. You would like to help listen and ensure that their questions are answered at the appointments. Perhaps if you can convince her first, she can talk your grandpa into letting you go.


Quote:
Originally Posted by jmarshall23 View Post
I don't know how many bags of blood he's getting. He's only had 3 transfusions(including the latest one). The transfusion he got before this lasted him 8 weeks. The boost he got was almost to 11. The hemoglobin didn't fall to below 8(the latest blood test had him at 8.1), but he wanted the transfusion because he couldn't get through the day.
You really want to track the units/bags of blood that your grandpa is getting and when on your spreadsheet. Once he hits around ~20 units of blood, iron overload becomes an issue.

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Originally Posted by jmarshall23 View Post
This is where things get interesting. In January of this year he complained of having low energy and he went to the hospital and doctors office 4 or 5 times before getting diagnosed with MDS RAEB. He wasn't diagnosed until May. They did a bone marrow biopsy and after that they diagnosed him with MDS.

In July they gave him a B12 shot(after my grandmother repeatedly asked the doctor), and his hemoglobin did go up after the shot. They haven't given him another shot since(even though my grandmother has been continually asking the doctor for another b12 shot for him).

Is it still possible that this is a b12 deficiency issue?
It is a very real possibility that your grandpa does not have MDS but does have a vitamin B12 deficiency. A B12 deficiency can mimic the symptoms of MDS, including blasts! Left untreated, it can kill him.

This may be the angle that you can use with your grandmother to get into your grandpa's appointments. You can be their voice for B12 testing and for regular B12 shots. They can check your grandpa's serum B12 and also do other more accurate tests (I don't remember the names offhand) to easily determine whether he needs B12 shots. So, make sure to push for them especially if he responded positively to B12 shots before! If his doctor won't listen or do the testing, I would find another doctor.

As we age, our body naturally loses intrinsic factor which is necessary for the absorption of B12. That is why some people require the shots. If your grandpa is a vegetarian, it is even more likely that this is a problem.

Someone posted a very interesting video on this forum awhile back on B12 deficiency. I think this is the video.

https://www.youtube.com/watch?v=isHI7JLWN_o

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Originally Posted by jmarshall23 View Post
They are giving him Procrit shots. Do you guys think Vidaza is better then Procrit?
Did they test his EPO before giving him Procrit shots? Unless his EPO was low, Procrit is unlikely to help with anything.

Vidaza is not something that I would pursue at this point.

Keep fighting for him!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #20  
Old Fri Sep 8, 2017, 05:07 PM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by jmarshall23 View Post
What sub-forum should I post it in?
Justin,

I suggest asking in the General Health Issues forum, since your question is a practical one about nutrition, energy levels, and quality of life.
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Old Fri Sep 15, 2017, 02:00 PM
jmarshall23 jmarshall23 is offline
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Just a quick update.

I got the bone marrow information on my grandpa(the bone marrow test is from May of this year). He has 7% blasts. So does that mean he's RAEB-1? Also does anyone know were to find his Cytogenetics information? I read that that information is also critical in figuring out how well someone will fair with MDS.

After his latest transfusion his hemoglobin went up to 10.8. This might seem like a silly question but is it still possible this is all due to a b12 deficiency?
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Old Sat Sep 16, 2017, 12:38 AM
Hopeful Hopeful is offline
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Quote:
Originally Posted by jmarshall23 View Post
Just a quick update.

I got the bone marrow information on my grandpa(the bone marrow test is from May of this year). He has 7% blasts. So does that mean he's RAEB-1? Also does anyone know were to find his Cytogenetics information? I read that that information is also critical in figuring out how well someone will fair with MDS.

After his latest transfusion his hemoglobin went up to 10.8. This might seem like a silly question but is it still possible this is all due to a b12 deficiency?
From what I have read, it is still possible that this is due to a B12 deficiency. The B12 test is easy to do and the treatment for a deficiency is relatively inexpensive. Has he been tested yet?

The cytogenetic testing would have had to been ordered at the time of his BMB. For me, the results have always come back in a separate report.
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Sun Sep 17, 2017, 12:50 AM
jmarshall23 jmarshall23 is offline
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I finally got the bone marrow test paperwork from my parents. The 7% number was not quite right, and I'm curious if you guys can help me through this. In fact on his bone marrow paperwork, it says he has RCMD not RAEB(the hemo doctor came up RAEB).

There are two terms lists on his bone marrow paperwork CD34 and CD45. CD34, from what I have read, is responsible hematopoietic activity in bone marrow. Which from I've read is the mechanism that deals with red stem cells turning into red blood cells(or even going to white blood cells). Is that correct? CD45 however deals with activation of T-Cells which are responsible for dealing with the immune system.

The CD34 blast count is (3% to 4%), and CD45 blast count is 7%. So when figuring out what form of MDS you have, is it correct to take the higher of the two blast counts? That's the only way I can see the hemotolgist coming up with RAEB and the hospital doctors coming up with RCMD. You can't have RAEB if your blast count is < 5%.

Or am I looking at things all wrong :P.
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  #24  
Old Wed May 30, 2018, 07:42 AM
sidhusingapore sidhusingapore is offline
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Generic Azacitidine now approved in Singapore

Dear Friends, now Generic versions of Azacitidine are now approved and available in Singapore. They are equally effective as Vidaza (they are approved by Health Sciences Authority, Singapore).

My grand father got diagnosed and is being treated with this...he is responding well.

Better enquire your doctors about the Generic versions. The treatment cost might become atleast 1/2 of that with Vidaza.
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