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

What is your father's situation that is leading to a diagnosis?

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

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.

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

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... :cool:

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.

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!

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

Hi Carole,

If you are in the LA area, I would recommend Dr Paquette for a second opinion. Do you have any cytogenetic abnormalities?

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.

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

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

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?

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. :)

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.

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.

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

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.

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.

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:confused::confused::confused::confused::confused::confused:

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.

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.

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