MDS RAEB-2 and now severe Myelofibrosis

[PattiDean]

Originally Posted by MagicBob

Hi Patti and Dean,

Good to see your post, I sent you an email several days ago, as we hadn't seen any post for awhile. Happy to see that Dean is finally getting the Vidaza, and praying that it helps boost his counts.

My MDS doctor at Johns Hopkins called yesterday morning and informed us that the final report from BMB shows Blasts at 20, a real shocker. Also indicated that I only have a 50-50 chance for the Clinical Trial.

Platelet transfusions aren't helping currently at 7.

Hanging in there, Bob and Dru

Hi Bob and Dru,

I saw your email yesterday, and sent a reply to your email address. I hope you received it. If you have a chance, please let me know.

We are so sad to hear you are not doing well, you need some good news, that's for sure. When will you find out about qualifying for the trial at Johns Hopkins. Waiting and wondering is so difficult.

Dean is off to labs in a little while, wanted to reply to you before we left. Do you have labs today? Dean's platelets dropped to five a week ago, but they came up a little after the single donor transfusion. We will find out how the numbers are in a little while.

As always, keeping you in our thoughts and prayers down here.

Sending you lots of hugs, faith and hope, along with a little laughter.

Patti and Dean (((HUGS)))

[sbk007]

I'm still on the fence. I am sooooo not ready..I got a call a week ago and was told they found a preliminary match, they need me to come in discuss it a little more, then drill down and see how good the match is. I've done well with Vidaza but it doesn't work forever, so I'm having panic attacks about going through with the transplant and wonder if I'm best taking my chances with Vidaza then using the transplant as a last resort, fully knowing the results and odds would be much worse having it later rather than sooner.
My Docs cant even help me with the decision, and I cant expect them to.
I'm going to have another consult with the transplant guy and see if he can sway my decision. Good Luck & Stay Well. One day at a time...
P.S I live in Ny. Im using Cornell-Weil/Columbia Presbytarian. Same team that the GMA talk show host used.

[susanML]

Originally Posted by sbk007

I'm still on the fence. I am sooooo not ready..I got a call a week ago and was told they found a preliminary match, they need me to come in discuss it a little more, then drill down and see how good the match is. I've done well with Vidaza but it doesn't work forever, so I'm having panic attacks about going through with the transplant and wonder if I'm best taking my chances with Vidaza then using the transplant as a last resort, fully knowing the results and odds would be much worse having it later rather than sooner.
My Docs cant even help me with the decision, and I cant expect them to.
I'm going to have another consult with the transplant guy and see if he can sway my decision. Good Luck & Stay Well. One day at a time...
P.S I live in Ny. Im using Cornell-Weil/Columbia Presbytarian. Same team that the GMA talk show host used.

I understand - I go from positive to should I - back and forth - Pray about it and hopefully you will get the answer.

[PattiDean]

Originally Posted by susanML

I guess we all in the same boat - so lets just all hold on and try and float thru this - Gotta have faith and hang on tightly - just had a meltdown at work - then it comes to me - heck we all really doing the best we can - :-)

Thank you Susan! You are right, you each are doing the best you can! I know I couldn't be as brave as each of you are, I become overwhelmed, and I am just watching.

Sending you lots and lots of (((HUGS))), Patti and Dean

[Susan L]

You are doing more to help than you think - hang in there all the way!!

[Susan L]

Hi - I was wondering if you decided for the BMT? I went for my evaluation and had another biopsy today and waiting for a call as to when I can be admitted. I understand I will have chemo first then hopefully the blasts will be down and I can go ahead with the search for a transplant. I am feeling positive with this. Only thing bothering me is the stay is going to be all inpatient and I will need a caretaker to stay with me 24/7 while in the Hope House - and that will be for up to 100 days. We are all by ourselves and wonder if they sometimes they have people that can help with staying while the spouse has to take care of things at the house ?

[sbk007]

Originally Posted by Susan L

Hi - I was wondering if you decided for the BMT? I went for my evaluation and had another biopsy today and waiting for a call as to when I can be admitted. I understand I will have chemo first then hopefully the blasts will be down and I can go ahead with the search for a transplant. I am feeling positive with this. Only thing bothering me is the stay is going to be all inpatient and I will need a caretaker to stay with me 24/7 while in the Hope House - and that will be for up to 100 days. We are all by ourselves and wonder if they sometimes they have people that can help with staying while the spouse has to take care of things at the house ?

I decided No. You can send me a PM on why. What kind of chemo first to get the blasts down?
Did they tell you how long it takes to get preliminary matches?. The way cornell weill works is they take your blood hla, then do a preliminary which takes 2 to 3 months(That's what they told me an dhow long it took). Then they'll do more extensive tests to see how good the match is. The preliminary is free, but the more extensive one to see how good the match is cost around 3k, some insurance co pay some don't, if they don't then if your income is less than your outcome(I made that word up just now) then they have grants to pay for it. This is important because it could take a bunch of donors to test before they find a good match and something that can cost a few bucks. As far as 24/7 care I know you can get it thru some agencies but haven't researched it enough. Its overwhelming, I know..Deep breaths...one day at a time..

[MagicBob]

Originally Posted by PattiDean

Hi Bob and Dru,

I saw your email yesterday, and sent a reply to your email address. I hope you received it. If you have a chance, please let me know.

We are so sad to hear you are not doing well, you need some good news, that's for sure. When will you find out about qualifying for the trial at Johns Hopkins. Waiting and wondering is so difficult.

Dean is off to labs in a little while, wanted to reply to you before we left. Do you have labs today? Dean's platelets dropped to five a week ago, but they came up a little after the single donor transfusion. We will find out how the numbers are in a little while.

As always, keeping you in our thoughts and prayers down here.

Sending you lots of hugs, faith and hope, along with a little laughter.

Patti and Dean (((HUGS)))

Hi Patti and Dean,

We think about you all every day, and hoping Dean is doing better than myself.

Blasts increased to 20, and Platelet transfusions are becoming less effective and both the MDS specialist at Johns Hopkins and my Hematologist are not very optimistic.

On Sunday afternoon, I noticed black stools and went immediately to the emergency room, diagnosed with internal bleeding. I was admitted and spent the next three days receiving transfusions.

Tuesday morning's visit by my Hematologist was a bad day; with Dru and our daughters present he informed us that there wasn't any more he could.
Suggested that we talk with the hospital case worker and to make arrangements for home care.

Discharged yesterday, and this morning we all met with the Visiting Nursing Association.

We are still fighting and kicking, and you all will be updated, either by me or my daughter, Beth


Our Love, Faith, Hope and Prayers,

Bob and Dru MagicBob

[Sally C]

Dear Bob, Dru and family,
You are all in my prayers. God is with you as you know.
God Bless.
With love and prayers,
Sally

[Whizbang]

ditto...

Originally Posted by Sally C

Dear Bob, Dru and family,
You are all in my prayers. God is with you as you know.
God Bless.
With love and prayers,
Sally

[PattiDean]

Originally Posted by MagicBob

Hi Patti and Dean,

We think about you all every day, and hoping Dean is doing better than myself.

Blasts increased to 20, and Platelet transfusions are becoming less effective and both the MDS specialist at Johns Hopkins and my Hematologist are not very optimistic.

On Sunday afternoon, I noticed black stools and went immediately to the emergency room, diagnosed with internal bleeding. I was admitted and spent the next three days receiving transfusions.

Tuesday morning's visit by my Hematologist was a bad day; with Dru and our daughters present he informed us that there wasn't any more he could.
Suggested that we talk with the hospital case worker and to make arrangements for home care.

Discharged yesterday, and this morning we all met with the Visiting Nursing Association.

We are still fighting and kicking, and you all will be updated, either by me or my daughter, Beth


Our Love, Faith, Hope and Prayers,

Bob and Dru MagicBob

Dear Bob, Dru and family,

It is so very sad to read your post, Bob. We wanted to hear good news for you and your family.

Bob, we never know how strong we are until being strong is the only choice we have. You are so very strong, you are giving your family the strength to keep fighting and kicking.

It has been a long week for Dean, but we have a little hope. Dean's oncologist said he wanted Dean to try Vidaza, even though the Dacogen stopped working. This week was Dean's first treatment. We won't know for awhile if it is helping or not.

Dean has received transfusions everyday this week, along with the chemo, so we have had eight and nine hours days. Dean's platelets dropped to 3 on Wednesday and his hemoglobin was 7.1 yesterday. Dean received PRBC on Tuesday and today, and platelets Tuesday and Thursday. We now have a long week end ahead of us before labs again.

Are your arms bruised? Dean's arms look awful. He is still very, very weak and short of breath. Vidaza is Dean's last option, after that he will only have transfusions, and we are not sure how long they will help.

You both are heroes to those who love and know you. Dean never complains or gets angry, just sad and scared at times.

Bob and Dru it is very difficult to find the words to tell you how we feel. Please know that your posts have meant the world to us in these last few weeks. Everyday Dean asks "Did MagicBob post something today?". Even though we have not met, Dean feels a very special connection with you.

We will keep you and your family in our hearts, thoughts and prayers. We have to keep having hope, and with faith and prayers that is possible.

Lots and lots of love and (((HUGS))) for you, Dru and your daughters!

Patti and Dean

[Susan L]

Howdy - Been in a bit of a whirlwind with everything since the eval day. Diffenately going into AML - so transplant only option. Had such a good talk with the doctor Dr Larry Morris at Ga Bone Marrow Transplant group and he is straightforward and honest - which I love. Went back Thursday for another BMB - and now Dr said if he doesnt call me Monday call him Tuesday for info on when will be admitted. I will be having 4 to 6 wks of chemo - then go to the Hope Lodge to get stronger and hopefully move onto the transplant - Now I know things never go to plan I feel right about it. I am scared - and I dont want to leave my husband and home - for the wks and still dont have my head wrapped around the possibility of being at the lodge for months ---- woke up each night and said oh no this is not going to happen then try to calm down. My biggest worry - among many things - is they say you need someone with you 24/7 at the lodge - I do not have anyone but my husband and he is not able to just leave our home and 4 dogs - who can just leave - so I am trying to find out how I can find volunteer caregivers that can stay and take me to the transfusion place --- just dont know where to find that help yet. Hope everyone is dealing w/their dx and keeping all at bay. Love to all - Susan

[Sally C]

Hi Susan,
I know you have a long road ahead but I am so impressed with your positive and upbeat attitude!
I wish you all the best - I know you'll work everything out.
God Bless and protect you,
Sally

[Susan L]

Thank you - I just want this so to work - I do have faith - and I hope we all could just get some time of no pain and just not have to have this remind us all the time.

[sbk007]

Originally Posted by Sally C

Hi Susan,
I know you have a long road ahead but I am so impressed with your positive and upbeat attitude!
I wish you all the best - I know you'll work everything out.
God Bless and protect you,
Sally

Ditto! Very Strong Lady! Inspirational!

[PattiDean]

Originally Posted by Susan L

Howdy - Been in a bit of a whirlwind with everything since the eval day. Diffenately going into AML - so transplant only option. Had such a good talk with the doctor Dr Larry Morris at Ga Bone Marrow Transplant group and he is straightforward and honest - which I love. Went back Thursday for another BMB - and now Dr said if he doesnt call me Monday call him Tuesday for info on when will be admitted. I will be having 4 to 6 wks of chemo - then go to the Hope Lodge to get stronger and hopefully move onto the transplant - Now I know things never go to plan I feel right about it. I am scared - and I dont want to leave my husband and home - for the wks and still dont have my head wrapped around the possibility of being at the lodge for months ---- woke up each night and said oh no this is not going to happen then try to calm down. My biggest worry - among many things - is they say you need someone with you 24/7 at the lodge - I do not have anyone but my husband and he is not able to just leave our home and 4 dogs - who can just leave - so I am trying to find out how I can find volunteer caregivers that can stay and take me to the transfusion place --- just dont know where to find that help yet. Hope everyone is dealing w/their dx and keeping all at bay. Love to all - Susan

(((HUGS))))

Susan, I so wish that I could be there for you, Georgia isn't that far from Florida! It is just Dean and I, no other family, so we understand how very difficult it is, emotionally and physically, when you don't have family to turn to.

We do have a little 13 year old Chihuahua who is "our little girl", she gets us through those overwhelming days.

We are keeping you in our thoughts and prayers down here, and wish we were able to be there for you.

Lots of love and (((HUGS)))

Patti and Dean

[Susan L]

Hi all-- You know I really dont feel like I such a positive person but I know I am. I think we all are - others see that but we dont. Heck - with my husband and I being alone for so many years we have just learned there is no other choice in making decisions but going head on. Patti - one of my dogs is a chihuahua - Roo - 14lbs of terror. I have two American Bulldogs one male Rocky 140 lbs - the gentle giant - his sister Adrianne 70lbs - a white cotton ball - then Jada - 55 lbs black lab - crazy over her pink ball. They are my happiness - they are all rescue dogs. Love them so much - they bring such happiness. Little by little we will figure out something for the 100 days I have to stay after the hospital which will be the 4 to 6 wks - ugh -- somehow there is a way. Take care all - love to all!!

[DebS]

Best of luck to you, Susan. You will be in all of our thoughts and prayers!

God bless!

Deb

[Chirley]

I too am alone, no husband, no children. My pets (don't even like to call them that) keep me going.

My 13 yo chihuahua died last year, it was a sudden illness on top of a chronic condition and I was devastated. I still had a 11 year old Kelpie to care for and a 10 yo cat so I still had responsibilities and companionship. Since then my father bought a rescue kitten from the Council pound and she is a real source of entertainment and unconditional love. Even my old cat and dog are amused by her antics. I'm very lucky all my "girls" get along and look after each other.

Gidget..........Kelpie
Betty............Cat
Baby Boots....Kitten

[PattiDean]

Originally Posted by Chirley

I too am alone, no husband, no children. My pets (don't even like to call them that) keep me going.

My 13 yo chihuahua died last year, it was a sudden illness on top of a chronic condition and I was devastated. I still had a 11 year old Kelpie to care for and a 10 yo cat so I still had responsibilities and companionship. Since then my father bought a rescue kitten from the Council pound and she is a real source of entertainment and unconditional love. Even my old cat and dog are amused by her antics. I'm very lucky all my "girls" get along and look after each other.

Gidget..........Kelpie
Betty............Cat
Baby Boots....Kitten

Chirley,

Thank you for sharing your story about your four legged family. Dean and I are both "only children", no siblings, and no children, our pets have always been our family.

I have a cousin in Kentucky, her and her husband have two cats and four dogs, at night they all sleep in the bedroom together, it is a funny sight to see. Each of the dogs and cats have their place on the floor!

I love the names. It was sad to hear about your Chihuahua. We have had our little one since she was two months old. She is blind in one eye and is beginning to have seizures, thankfully not often. It is going to be so difficult to say good bye when the time comes. I do hope Pebbles outlives Dean, because it will be so very difficult for him if she died, she has given him so much comfort in this past year.

I lost my mom in April, and Dean and Pebbles are all I have. I worry about the day they are not in my life anymore, I will be totally alone. I would like to rescue an older dog when I no longer have Pebbles, we could take care of each other! :-)

[Chirley]

Hi Patti,

I can't imagine my life without a four legged friend. When my little Tina became very ill I had to make the decision to euthanise. It really wasn't a difficult decision to make. I loved her so much that there was no way I was going to let her suffer. I miss her every day but I know I gave her the best life any dog could have and the best death I could give her too.

She had Addisons Disease from age 4 and there were a lot of touch and go moments throughout her life and then at the end she caught a virus off a fruitbat. She used to chew the half eaten palm dates the fruit bats dropped and she caught a virus from the saliva. She was sick one day and gone the next. Such a shock! Now I'm paranoid about searching my yard for palm dates every day and putting them in the garbage. I never knew this virus existed but I'll never forget it now.

I also learnt my lesson about the cost of treatment and I now have Health Insurance for all my "girls" so that I never have to consider the cost of treatment against the health and well being of my girls.

I think rescuing an older dog is a wonderful idea. Our local Council Pound have a scheme where any one older than 60 who adopts an older dog or cat (4 years or older) get the animal for free with all the bits included such as desexing, vet checking, vaccinating, microchipping and Council Registration.

I hope you don't have to think about it for a few more years though. My next door neighbour has a terrier mix (Lucy) who is 17 years old and still beats their younger dog to the treats, goes up and down a tall flight of outside stairs many times a day and tries to play ball with the grandchildren when they visit.

Regards

Chirley

[PattiDean]

Originally Posted by Chirley

Hi Patti,

I can't imagine my life without a four legged friend. When my little Tina became very ill I had to make the decision to euthanise. It really wasn't a difficult decision to make. I loved her so much that there was no way I was going to let her suffer. I miss her every day but I know I gave her the best life any dog could have and the best death I could give her too.

She had Addisons Disease from age 4 and there were a lot of touch and go moments throughout her life and then at the end she caught a virus off a fruitbat. She used to chew the half eaten palm dates the fruit bats dropped and she caught a virus from the saliva. She was sick one day and gone the next. Such a shock! Now I'm paranoid about searching my yard for palm dates every day and putting them in the garbage. I never knew this virus existed but I'll never forget it now.

I also learnt my lesson about the cost of treatment and I now have Health Insurance for all my "girls" so that I never have to consider the cost of treatment against the health and well being of my girls.

I think rescuing an older dog is a wonderful idea. Our local Council Pound have a scheme where any one older than 60 who adopts an older dog or cat (4 years or older) get the animal for free with all the bits included such as desexing, vet checking, vaccinating, microchipping and Council Registration.

I hope you don't have to think about it for a few more years though. My next door neighbour has a terrier mix (Lucy) who is 17 years old and still beats their younger dog to the treats, goes up and down a tall flight of outside stairs many times a day and tries to play ball with the grandchildren when they visit.

Regards

Chirley

Hi Chirley,

I so enjoyed reading about your four legged furry family. Dean and I have had four very special dogs in our lives. The first was Duffy, a Shetland Sheepdog, then a rescued mutt, Clancy, and a Dachshund, Snickers, who was a little clown, always getting in trouble.

We miss each of them, they were our family. Now we only have Pebbles, when she is no longer with us, I definitely will look for an older dog to rescue, and hopefully make their final years on earth better. I believe some of our rescue groups also have specials for seniors that adopt homeless dogs and cats. I don't know who is rescuing who though, I feel as though my doggies have rescued me.

That was so sad to read about Tina. I liked what you wrote about giving her the best life, and best death, that is what it is all about, for our four legged friends, and humans.

I do hope Pebbles is here for a few more years, because she and Dean are all I have. Pebbles is blind in one eye, has seizures, but still acts like a puppy. Her hearing isn't very good either, but sometimes I wonder if she just hears what she wants to hear, like when I call her and she doesn't come. :-)

Thank you Chirley for sharing your stores with me, you put a big smile on my face, and I need that right now!

(((HUGS))) Patti

[susanML]

Good morning all - Had a horrible weekend with breaking down every few minutes - that is not like me - But anyway now that that is overwith I am ready to get this all moving - Doc said I may get a call today but dont think I will since it is a holiday - but will call tomorrow to get updated plan. I am ready - and hope everyone is doing the very best they can. Love to all - Susan

[MagicBob]

Originally Posted by susanML

Good morning all - Had a horrible weekend with breaking down every few minutes - that is not like me - But anyway now that that is overwith I am ready to get this all moving - Doc said I may get a call today but dont think I will since it is a holiday - but will call tomorrow to get updated plan. I am ready - and hope everyone is doing the very best they can. Love to all - Susan

Good Morning to you, Susan,

My wife and I are praying for you along with unknown thousands, strength
and faith are coming your way.

I have a strong feeling that you will receive the awaited call today, if not, many are holding you in their arms until tomorrow's call.

With our love, prayers and comfort,

Dru and Bob MagicBob

[susanML]

Thank you so much for your kindness.