Home         Forums  

Go Back   Marrowforums > Community > Tell Your Story
Register FAQ Search Today's Posts Mark Forums Read

Tell Your Story Say hello or share your experiences

Reply
 
Thread Tools Search this Thread
  #126  
Old Mon May 5, 2014, 03:30 PM
anslia anslia is offline
Member
 
Join Date: May 2014
Posts: 6
New

Hi,

Discovered this forum and have been browsing the information/stories, while awaiting a diagnosis on my father. Dependent on diagnosis, I may not be here long - however, I am thankful for finding this forum, and a community of support.

Sincerely,
Anslia
Reply With Quote
  #127  
Old Mon May 5, 2014, 04:14 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
What is your father's situation that is leading to a diagnosis?
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
Reply With Quote
  #128  
Old Mon May 5, 2014, 06:12 PM
anslia anslia is offline
Member
 
Join Date: May 2014
Posts: 6
Hi Bailie

If I am posting this in the wrong place...I apologize.

My father's age: 75


My dad was hospitalized 7 Mar. His Hgb was 8.7, and after a colonoscopy, was advised that low Hgb was due to a small polyp. On 10 Mar he underwent his first blood transfusion, and was discharged 11 Mar w/Hgb 8.8. The hematologist contacted said that he would see my father in his office.

18 Mar. Hematologist said that Dad is to begin receiving IV-iron treatment.
His lab results from that appt were: WBC 1.8; RBC 3.6; Hgb 11.8; Hct 33.9; MCV 94.2; MCH 33; MCHC 34.9; RDW 16.1; PLT 215; MPV 7.1; Gran# 0.6; Lymph# 1.2; Mono# 0; Gran% 30.6; Lymph% 67.4; Mono% 2.

An iron study was also done: Iron 171; UIBC 97; TIBC 268; %Saturation 64; Ferritin 618.3

In addition...an Erythropoieten Serum: 116


25 Mar IV Iron given. Told that the "anemia direct result of polyp".

27 Mar Hospital. Transfusion. Hgb 8 (Do not have any other CBC figures)

8 Apr IV Iron given. Pathology from polyp = all good.

14 Apr Hospital by ambulance. Hgb 7.8 Transfusion given.
15 Apr Transfusion given. Cat scans clear. Discharged and scheduled for a bone marrow biopsy as "It is something with the bone marrow".

22 Apr BMB done "Should not need another transfusion for at least 2 weeks". Results will be in 7+ days. CBC:
WBC 1.7; RDW 16.4
RBC 2.8 PLT 263
Hgb 8.9 MPV 6.9
Hct 25.3 Gran# 0.4
MCV 91.9 Lymph# 1.2
MCH 32 Mono# 0.1
MCHC 35 Gran% 23.1
Lymph% 73.5
Mono% 3.4

29 Mar Transfusion
WBC 1.9 MPV 7
RBC 2.6 Gran# 0.3
Hgb 8.1 Lymph# 1.5
Hct 23.9 Mono# 0.1
MCV 93.6 Gran% 15
MCH 32 Lymph% 81.10
MCHC 34 Mono% 3.90
RDW 17.5
PLT 308

1 May Bone Marrow results- inconclusive/not a good sample. Undergoes another bone marrow biopsy.

5 May Hospital - transfusion. (I will have a CBC this evening...but Hgb was 8.2)

We are supposed to receive results from bone marrow biopsy on Weds.

I apologize that this is so long.

Sincerely,
Anslia
Reply With Quote
  #129  
Old Mon May 5, 2014, 08:30 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
I wish your Dad the best possible diagnosis. Naturally no one on this forum can make any kind of diagnosis. It would be a guess. Hopefully they will get a good indication from the biopsy. I am surprised that they didn't do a biopsy sooner. I had two BMB within a week when my similar numbers showed up on a CBC.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
Reply With Quote
  #130  
Old Mon May 5, 2014, 08:45 PM
anslia anslia is offline
Member
 
Join Date: May 2014
Posts: 6
Hi

I do not expect a diagnosis from this board, and I apologize if I gave that impression. It is just the frustration of knowing something is wrong...and by following the numbers....seeing that whatever it is appears to be quite aggressive.

In addition...I will admit that it bothers me that the hematologist is not actively monitoring my father. "Call the office and make an appointment if you think he needs to be seen."

I will also add...that I am not with my parents yet. They live a few states away - and I am actively preparing for an extended visit at this time. And until a few weeks ago - they were not asking for copies of any lab work, etc.

Anyway, thank you very much for taking the time to respond to me.

Sincerely,
Anslia
Reply With Quote
  #131  
Old Fri May 23, 2014, 03:53 AM
Lilithe Lilithe is offline
Member
 
Join Date: May 2014
Location: Middletown, CA USA
Posts: 1
So glad to have found this forum!

Hi! I'm Lilithe. 44 years old. Just diagnosed today with PNH. Was tentatively diagnosed with MDS 8 years ago, but nothing definitive, so I walked away from the bulk of the medical world and tried to heal myself with diet addressing what I thought was the cause. But now I can see the problems I have had most of my life were symptoms and not causative. So good to have a sound diagnosis so that I can stop struggling to deal with it on my own and head in a direction that may help me get my life back. Just had a BMB today, so a wee bit sore, but grateful to not feel so in the dark. Thanks for this forum! Oddly enough, I found it because I have been binge watching "House" for the last few weeks (not much energy for anything else!!) and was curious if they had ever mentioned PNH in an episode - led me here! Kismet...
Reply With Quote
  #132  
Old Fri May 23, 2014, 10:21 AM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,503
Lilithe,

Good luck getting a handle on your illness and what you can do about it. I hope you'll be able to consult a PNH specialist.

You must have run across the PNH mentioned on "House" TV show thread. There were a surprising number of "House" episodes that touched on bone marrow failure. Maybe my family is just attuned to notice them because it's a medical area we're familiar with, but AA, MDS, and PNH seemed to have just the right combination of mysterious symptoms, terminology, and diagnostic challenges to suit the writers of that show.
Reply With Quote
  #133  
Old Tue May 27, 2014, 05:59 PM
triumphe64 triumphe64 is offline
Member
 
Join Date: Feb 2008
Location: Dallas, Texas
Posts: 441
Quote:
Originally Posted by Neil Cuadra View Post
Lilithe,

Good luck getting a handle on your illness and what you can do about it. I hope you'll be able to consult a PNH specialist.

You must have run across the PNH mentioned on "House" TV show thread. There were a surprising number of "House" episodes that touched on bone marrow failure. Maybe my family is just attuned to notice them because it's a medical area we're familiar with, but AA, MDS, and PNH seemed to have just the right combination of mysterious symptoms, terminology, and diagnostic challenges to suit the writers of that show.
There was one with a bicycle rider who turned out to have PRCA. He also had MG. At the end of the show, they removed his thymus gland. Problem solved. In the real world less than one person in the world gets this combination in any year. I love(d) House.
__________________
Dallas, Texas - Age 77 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
Reply With Quote
  #134  
Old Mon Jun 16, 2014, 09:02 AM
julielucas julielucas is offline
Member
 
Join Date: Jun 2014
Location: Lumberton, North Carolina
Posts: 21
Jeff's Journey

Hey y'all! This is Julie, my husband Jeff was recently dx with MDS. Wish I could tell you what subtype etc but no one has told us yet. I'll try to find the correct forum to give all the details. Just wanted to introduce myself and tell you that I'm sure glad this forum exists!
Reply With Quote
  #135  
Old Fri Jan 9, 2015, 12:55 PM
Carole L Carole L is offline
Member
 
Join Date: Jan 2015
Posts: 16
Newly Diagnosed

Hi Everyone,
Am a 58 yr old woman recently diagnosed with MDS-refractory cytopenia with multilineage dysplasia less than 2% blasts. IPSS-R 4 - intermediate risk. Still in shock, researching like crazy and emotionally on a roller coaster ride.

Have been offered Viadaza to start as first line, with BMT as follow up- no thanks. Such high risks involved in BMT -not sure I could commit.

Am curious to know if anyone has been to Angeles Hospital in Tijuana, Mexico or any other alternative health clinic. If so, what sort of results have folks had.

Thanks
Carole
Reply With Quote
  #136  
Old Fri Jan 9, 2015, 02:40 PM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 721
Quote:
Originally Posted by Carole L View Post
Hi Everyone,
Am a 58 yr old woman recently diagnosed with MDS-refractory cytopenia with multilineage dysplasia less than 2% blasts. IPSS-R 4 - intermediate risk. Still in shock, researching like crazy and emotionally on a roller coaster ride.

Have been offered Viadaza to start as first line, with BMT as follow up- no thanks. Such high risks involved in BMT -not sure I could commit.

Am curious to know if anyone has been to Angeles Hospital in Tijuana, Mexico or any other alternative health clinic. If so, what sort of results have folks had.

Thanks
Carole

Hi Carole,

If you are in the LA area, I would recommend Dr Paquette for a second opinion. Do you have any cytogenetic abnormalities?
__________________
53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
  #137  
Old Fri Jan 9, 2015, 03:44 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Carole L,

You said, "Have been offered Viadaza to start as first line, with BMT as follow up- no thanks."

Vidaza is generally offered primarily to high risk patients. I had Vidaza for eight months without any side effects. I don't think I would have made it for eight months without the Vidaza. I never had any transfusions or anything other than the Vidaza during that time.

You seem to have made the decision early on not to try to extend your life. I realize that it is a very difficult and personal decision. I wish you the very best.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
Reply With Quote
  #138  
Old Sun Jan 11, 2015, 02:19 PM
mausmish mausmish is offline
Member
 
Join Date: Mar 2010
Location: Maryland
Posts: 453
Carole,

My story was very similar to yours, diagnosed at age 56 and not wanting to pursue treatments that could reduce my quality of life for the little time I had remaining. I changed my mind and first decided to try Vidaza. I was lucky - a very quick, positive effect with no ill side effects. My counts returned to normal, and I looked and felt great. Months later, I started reconsidering the bone marrow transplant and visited several hospitals for consultations. All agreed that the Vidaza might work for years or might stop working anytime. The only chance at a cure was transplant. It was an agonizing decision but I decided to go for it. I had an unrelated matched donor. That was four years ago, and I am doing well with no evidence of disease at my last checkup in December. My husband and I chronicled our past 4 years in our blog, http://www.mausmarrow.com.

Only you can make the decision that's right for you. I wish you all the best.

Karen
__________________
Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
Reply With Quote
  #139  
Old Tue Jan 13, 2015, 03:14 PM
Carole L Carole L is offline
Member
 
Join Date: Jan 2015
Posts: 16
Newly Diagnosed Response to good folks

Thanks everyone for your comments. I must apologize for my harsh reaction re refusal of treatments although I think most of you will understand the ''shock" of it all.

I am now leaning toward a course of Vidaza as have had a chance to read people's experiences together with a little more research. As always time softens ones reactions. Short term discomfort from side effects that may yield less transfusions is of course of HUGE benefit.

Am awaiting treatment plan option details from Angeles hospital in Tijuana as believe that a non invasive approach can yield as good or better results for me. Saying that however, I am also a realist and realize the drug option may be the best route.

Thanks for the words and stories of hope re bone marrow transplant. Of course never say never.

With many thanks
Carole

Last edited by Carole L : Tue Jan 13, 2015 at 07:01 PM.
Reply With Quote
  #140  
Old Tue Jan 13, 2015, 11:45 PM
Cheryl C Cheryl C is offline
Member
 
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 839
Hi Carole - I also have MDS RCMD and my blast levels are similar to yours (not exactly sure at present as it's nearly 12 months since my last biopsy). I understand your reservations about rushing to conventional medicine for treatment. When my blast count reduced without treatment to 2% I decided not to embark on any conventional medicine options until absolutely necessary and 3 years later I'm still stable. In that time I've learned a lot, especially from this forum, and now if my condition seriously deteriorated I think I would probably have the confidence to seriously consider SCT or some other form of conventional therapy.

My biggest problem by far is white cells and neutrophils. I can manage my infection vulnerability reasonably well with diet and natural remedies along with the 4-weekly gamma globulin infusions. I feel well most of the time. However I gather you have a problem with your red cells. My impression is that this is harder to treat by natural means. I'm interested to know whether you have evidence that the Angeles hospital has had success with patients who suffer from the same issues that you have, and what types of treatment they offer?
__________________
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
Reply With Quote
  #141  
Old Wed Jan 14, 2015, 10:44 PM
Carole L Carole L is offline
Member
 
Join Date: Jan 2015
Posts: 16
Angeles hospital

Hi Cheryl,

I received news today from the Angeles hospital that they would not accept me as a patient. The reason is they honestly don't feel that their program of immunotherapy would help. Dr. Perez was clear, there is no cure for MDS and it is difficult to find the right treatment. Sad, but happy they were so honest with me.

So....onward to am not sure right now. Heading for a second transfusion early next week and then a meeting with my haematologist. Have a few more questions re Vidaza and then based on that info will make a decision whether to move ahead with the drug.

In the meantime, am going to order some Shark Liver Oil for overall health & well being but also see from former posts tis potentially good for increasing platelets perhaps?!

Am going to be moving into juicing and wheatgrass shots also as my digestive system seems to suffer as my haemoglobin drops. Strange.

Still coming to terms with MDS in my body and my life. Yoga and meditation are my pillars at the moment, but the most important is the love of my partner and sweet family and friends.

Happy for any comments or suggestions from folk on this forum.

Cheers Carole

Diagnosed Dec. 2014 MDS-RCMD Less than 2% blasts
No drugs as yet - stable.
Reply With Quote
  #142  
Old Wed Jan 14, 2015, 11:01 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Carole L,
Very tough decisions. I think the earlier a person decides the course of action the better. MDS seems to wait for no one. If a person decides to extend their life, it is very important to do so in optimum health. MDS seems to thrive on any weakness. It is a sobering disease. The only chance for extending life at your stage will probably be Vidaza then stem cell transplant, but that is for your Drs. to advise. Many, perhaps most, of us have been where you are in this decision making process. There is no wrong decision because it is so personal. Vidaza would be the least of my worries.
I wish you the best.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
Reply With Quote
  #143  
Old Thu Jan 15, 2015, 11:26 AM
Hopeful Hopeful is offline
Member
 
Join Date: Jan 2009
Location: California, USA
Posts: 721
Hi Carole,

The reason why I asked if you had any cytogenetic abnormalities in a previous post was because ATG can also be an option for some people with MDS-RCMD and no cytogenetic abnormalities or increased blasts. If this applies to you, I will try and dig up a presentation that talks more about this.
__________________
53 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
Reply With Quote
  #144  
Old Thu Jan 15, 2015, 12:35 PM
Carole L Carole L is offline
Member
 
Join Date: Jan 2015
Posts: 16
Hopeful

Thanks for your post Hopeful. I do not have the cytogenic report at the moment and my haematologist is away till next week. I do believe however, that he has given me the only options available for my specific MDS. But thanks for the info and I will inquire next week when I see him.

This morning after reviewing the BMB report, I understand at a deeper level what is happening in my body from the medical and scientific viewpoint.

Making plans now to rent a suite for a couple of months in Vancouver as that is where the Vidaza treatment will take place. We live about 3 hours away, (2 by ferry), so for the first 2 cycles will stay close to the hospital. Am blessed as a good portion of my family and sweet friends live in Vancouver so will have lots of support as well as my life partner beside me.

C
Reply With Quote
  #145  
Old Thu Jan 15, 2015, 01:46 PM
bailie bailie is offline
Member
 
Join Date: Dec 2013
Location: McMinnville,OR
Posts: 825
Carole L,

The Vidaza treatment is very simple generally. The only part that takes time is that they won't start mixing (it is a two part process) it until they see you. I got my shots (two each day for seven days) in my stomach. That sounded awful when they first talked about it, but they didn't seem to be a problem and they very seldom caused any pain. I did have to map out my stomach so they could get the seven days. The shots need to be an inch from the previous shots. I took an anti-nausea pill about an hour before the shots. The anti-nausea pills will almost always cause constipation. Be very aware and prepared. The actual getting the Vidaza takes about five minutes or less.

I lived a totally normal life for the eight months (seven days of shots, 21 days off) I was getting Vidaza. I was usually golfing 18 holes (walking six miles) the same day as the shots. The worst that I felt was a sunburn feeling in the location of the shots. It wasn't enough to lose sleep and a couple of Tylenol always made it easier/not noticeable. Naturally it is different for everyone, but generally the Vidaza is well tolerated.

Your blood counts will dip at about the second or third round of Vidaza and then should get better. My counts were all close to normal by the fifth round.

Will you be able to get the shots in your local area after the first two rounds? That is something to check on.

I wish you the best.
__________________
age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
Reply With Quote
  #146  
Old Tue Apr 14, 2015, 06:10 PM
dsandrock91 dsandrock91 is offline
Member
 
Join Date: Apr 2015
Location: Columbus, Ohio
Posts: 9
Unhappy Recently diagnosed and feeling scared

Hello my name is Dalesa and I was just recently diagnosed with aplastic anemia. I got diagnosed in September of 2014. At the present moment I am not receiving any treatments except monthly check of my blood cell levels.
I am only 23 and I feel like since I was diagnosed my life has stopped. I constantly worry about my numbers dropping that I am getting to the point I am afraid to live. I have goals of wanting to be a preschool teacher and starting a family but now I fear that I won't be able to because I never know when my numbers will drop or if I will get sick. When I got diagnosed I kept asking myself why me god, why now. I am young and should just be starting to live yet I feel I can't . Its hard for me to deal with it, I have no idea how to cope and live with AA.
When I got diagnosed the doctor told me this is what it seems like I have; guess I don't quite fit all of the criteria but fit most of it. It was hard for the doctors to figure out what was/is wrong with me because I didn't show all the common and well known signs/symptoms.
My family doesn't understand what going on or how to help me. When I get my levels checked and they drop slightly I feel like I'm the only one worried about them dropping, according to the doctor and medical staff they are stabilizing but to me they seem extreamly low and I worry about it. My boyfriend wants to try and understand and be there for me but its hard for me to explain how scared I truly feel all the time. Hoping for support and tips on how to deal with the fact that I have aplastic anemia and how to try and go back to living a semi normal life of a young adult.
__________________
Dalesa, 23 yrs old, diagnosed AA 2014, currently no treatment method being used.
Reply With Quote
  #147  
Old Sat May 2, 2015, 09:07 AM
saddaughter saddaughter is offline
Member
 
Join Date: May 2015
Posts: 2
Hello everyone,
My loving, wonderful, kind hearted, young father is critical in the ICU right now. Back story: My dad never gets sick or goes to doctor, this is his first hospital stay. He started feeling not well 3 months ago and thought a bad sinus infection. Was put on antibiotics with no relief. Then he developed a swelling of his anal area and decided to go to ER.
ER tried to lance swelling and said no pus. His blood work showed low platelets(105), low hemoglobin (9.4) and high wbc (19).
They did a blood smear which showed blasts in his blood. He then had a bone marrow biopsy which showed <5% blasts but irregular shaped WBC and some large platelets.
Plan was to start outpatient tx for MDS once infection clears. PROBLEM now is that his WBC keep going up. His rectal swelling turned purple and the rectal doctor thought a pocket of pus hiding and turning necrotic. He rushed to the OR and they found that it was just cellulitis with hemmorrhagic swelling on top. THe wound tested for gram positive cocci which I believe he's already been on antibiotics for.
My concern is that his WBC are not working right and are we missing something. How can he start treating the MDS asap if he has an infection. WBC today 26, platelets 97,
hg 8.4. Fever. Feels ok though.
ANY INSIGHT PLEASE PLEASE TELL ME, MY FAMILY IS SRUGGLING SO MUCH
Reply With Quote
  #148  
Old Sun May 3, 2015, 05:21 PM
Neil Cuadra Neil Cuadra is offline
Owner
 
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,503
saddaughter,

MDS can't be treated or cured promptly. It's a longer term effort.

That's why the first goal is to stabilize and patient and reduce the immediate dangers from symptoms or other conditions. As they treat your father's infection, they may want to give him blood and platelet transfusions to deal with the low HGB and low platelets, or drugs that can increase these counts even through they don't fight the underlying cause. Infections produce a higher than normal white count, so you probably can't judge how a bone marrow problem is affecting his white cells, but you'll want to keep an eye on his white count as they get his infection under control.

You're doing the right thing by asking questions and learning what you can, even though forum members here are almost all patients and caregivers, not physicians. Many of us have had similar experiences and know what you're going through.

Don't let doctors brush off your questions. Make sure they explain what's going on, what treatments and tests they are using or recommending (and why), and what other choices there are, as you deal both with the immediate crisis and the longer-term treatment plan.

Feel free to start new forum threads here with the questions that come up, and to let us know how it goes.
Reply With Quote
  #149  
Old Wed Nov 18, 2015, 02:01 AM
LesB LesB is offline
Member
 
Join Date: Mar 2009
Location: Mount Isa, Australia
Posts: 1
Hi I'm a SAA / PNH patient diagnosed with SAA in 1994 (no determined cause) then diagnosed with PNH via flow cytometry test in 2008 following a 2nd and larger PE. I had a PE earlier in 1996 but PNH was HAM tested and not flow cytometry tested for till 2008 following the 2nd larger PE.Currently treated & controlled with Cyclosporine for the AA & Warfarin for the PNH. My condition is stable.
Reply With Quote
  #150  
Old Mon Aug 1, 2016, 01:25 PM
Smiles Smiles is offline
Member
 
Join Date: Aug 2016
Location: edmonton alberta canada
Posts: 1
I'm Sue from Edmonton Alberta Canada

Hi my name is Sue. Diagnosed 10 months ago with MDS. Presently I have not received any treatment and suffer with severe anemia. Presently I work a 4 day which means I sleep and work only. When I'm not working I have more energy to spend time to socialize with my family. I am realizing what quality of life means to me and I'm suprised what matters most. I too was thinking of going to Dr Perez and I appreciate the earlier post regarding this. I'm working with my chi, meditating, juicing and a few other things. Are they working? Who knows I'm just glad I can do something for myself than the alternatives.
I have been living the wait and see game. Which has presented many life lessons. I have researched the drugs blood transfusions and transplant along with the respective side effects and balancing my quality of life baffling. Perhaps med is the way to go for some but I'm not sold.
Oh no this was suppose to be my introduction?? One last thing ...any edmontonians here? Please let me know. I am trying to find the support group here and the Canadian branch of Mds association is well ....let's leave that.
Happy August and thanks for listening.
Sue
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
5/10 Family member transplant donor mdsSUCKS MDS 20 Mon Feb 24, 2014 12:58 PM
New Member Profile: Evan MacNeil Marrowforums Site Announcements 0 Fri Nov 18, 2011 11:34 AM
New Member Profile: Alyse Booth Marrowforums Site Announcements 3 Wed Jun 1, 2011 06:37 PM
New Member Profile: Kirby Stone Marrowforums Site Announcements 0 Tue Jul 28, 2009 07:57 PM
New Member Profile: Birgitta Alexius Marrowforums Site Announcements 0 Sun May 10, 2009 03:39 PM


All times are GMT -4. The time now is 05:30 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2020 Marrowforums.org