Simply Filling/Core - Updates on Robin




View Full Version : Updates on Robin


nancy237
01-16-2011, 03:37 PM
I was going to go back and summarize but that will have to wait.
In a nutshell my husband (Robin) was diagnosed on Dec 20th
with Acute Lympthocytic Leukemia with a positive Philedelphia
Chromosome (ALL PH+) That is a very agressive form of Leukemia.
He is finished with his first round of Chemo and we are awaiting the bone marrow biopsy results that will tell us how effective the Chemo was.
The plan now is readmission to the hospital this Friday (Jan 21st) for
5 days of Chemo (2nd round).
We are home this week and enjoying going out to eat and family time .
His faith is strong that God is in control and that whether he is healed or not that God will use it for good..
Current prayer requests
1) that on Monday we are able to ask the Dr more questions about preceeding with Chemo verses a Stem Cell Transplant. I need peace that
our Dr is following the best possible treatment plan.
2) That this week Robin is able to continue to feel good and enjoy his time
at home .
3) That The 2nd round of Chemo is effective and side effects are mild.
4) That Robin stays infection free...


Vladadog
01-16-2011, 03:56 PM
You and Robin are certainly in my prayers!

Bunti
01-16-2011, 04:06 PM
Praying in Juneau.


Vickie
01-16-2011, 04:14 PM
You and Robin remain in my most fervent prayers. I will absolutely focus on these specific aspects.

How are YOU my friend?

Tejas
01-16-2011, 04:36 PM
Thanks for letting us know more Nancy. You, Robin and your family are in my heart. I'm also thinking of the doctors, hoping that they are guided to the right recommendations and treatment.

Vienna
01-16-2011, 05:11 PM
Thank you for sharing - Sounds like you are a supportive and knowledgable spouse. You and your husband are in my thoughts.

bargoo
01-16-2011, 05:36 PM
Keeping Robin in prayer. Have you thought about putting this post on Christian Encouragers or Prayer Warriors ?

nancy237
01-16-2011, 05:56 PM
You and Robin remain in my most fervent prayers. I will absolutely focus on these specific aspects.

How are YOU my friend?

LOL..vickie I read that like "how do you know me"
then I realized what you meant...

Mostly I am taking it one day at a time and letting friends do things for us that allows Robin and I more time to just enjoy each other. Last night I started thinking about his actual odds and had to call my cousin at midnight to talk out my fears. She lost her husband last year and she allows me to verbalize my fears honestly.

One of my biggest stresses at the moment is worrying that we have the best doctor..I like him but its hard to know if he is making the right treatment decisions.

I was just doing better dealing with empty nest depression so losing my husband would leave me totally struggling with identity crisis. It would take a while to decide where I want to live(moving from our house is the plan no matter how this turns out) where I want to work(I was just planning to go back to work before this hit)

rainbowsmiles
01-16-2011, 06:16 PM
LOL..vickie I read that like "how do you know me"
then I realized what you meant...

Mostly I am taking it one day at a time and letting friends do things for us that allows Robin and I more time to just enjoy each other. Last night I started thinking about his actual odds and had to call my cousin at midnight to talk out my fears. She lost her husband last year and she allows me to verbalize my fears honestly.

One of my biggest stresses at the moment is worrying that we have the best doctor..I like him but its hard to know if he is making the right treatment decisions.

I was just doing better dealing with empty nest depression so losing my husband would leave me totally struggling with identity crisis. It would take a while to decide where I want to live(moving from our house is the plan no matter how this turns out) where I want to work(I was just planning to go back to work before this hit)

DEAR NANCY....my heart really goes out to you...and i will keep you and your husband in my prayers...only faith can sustain you in times like these...i can not even begin to imagine how difficult it must be for you and i am so thankful you have a GOOD FRIEND to share with and confide in. sending you love, prayers and hugs....:hug:
susan

sloanie
01-16-2011, 11:45 PM
Nancy, I am still praying for you and Robin. Has Robin's doc given you a reason to worry or is your concern part of the big picture? You know you have the right to ask lots and lots of questions, and if you are not satisfied there is always a second opinion. You might also find some info and even live chat with specialists at the leukemia/lymphoma society: www.leukemia-lymphoma.org/all_page.adp?item_id=4591. I talked with some people there when my dad was first diagnosed, and they were very supportive.

Thanks for the list of specific concerns. I will continue to pray for y'all!

beach bum
01-17-2011, 07:10 PM
Dear Nancy:)

Robin & You are in my prayers that all will go well with the chemo treatments and that the leukemia will go into remission.Never feel that you're alone as the Lord is walking with you every minute of the day,and you will go thought this.

Hugs :)

Maryann

nancy237
01-17-2011, 11:20 PM
Thanks everyone !!! Sloan , that looks like a good resource that I will check out.


Excellent news today ...The first results from the bone marrow biopsy shows that the bone marrow is 100% free from cancer cells !!!
They have to do molecular & genetic testing on the biopsy and that will be done thursday. I really don't know what that is for but I think it is not called remission until that is clear.. We will still start the 2nd round
of Chemo Friday..

We love the doctor , but he had changed his treatment plan without explaining it to us , so we all talked more about that today.
The big question will be whether to do a Stem Cell Transplant .
The recent studies show that as the best way to not have a relaspe.
With this type leukemia, remission is often followed by relapse.
The SCT (stem cell transplant) is very risky but the odds are improved for a cure.
I can deal with any odds they give us but I HAVE to know I have done all I can to be sure he is getting the best treatment available.

ontarget
01-17-2011, 11:34 PM
Nancy, thank you for keeping us updated. You and Robin are definitely in my prayers. I admire both of you for your strength. What a blessin for you to have a friend you can confide in. And what a wonderful blessing that Robin's test came back with the wonderful results. I will pray for the specifics you asked. I am here for you, friend.

Vickie
01-18-2011, 12:01 PM
What awesome WONDERFUL news! Continued prayers for sure.

nancy237
01-18-2011, 07:03 PM
We now have an appointment set for this Thursday at Duke in Durham.
They will be evaluating him to decide if Stem Cell Transplant
is recommended .

Please join me in a specific prayer that the recommendation for or against Stem Cell Transplant is clearcut so that the decision is an easy one.

I need peace that we are getting the right treatment.

His Physical Therapy office called today and told us that all his PT for
his knees & hand will be free & a drug company called about an expensive drug and said that would be free..Praise.

ontarget
01-18-2011, 07:44 PM
Nancy, thank you for the update. That's wonderful news about Robin's PT and meds' costs. I will continue to pray--and I'll be specific. I will also be praying for you. I love you, my friend.

pam920
01-18-2011, 10:27 PM
Great news Nancy. Will continue to pray for both of you.

sloanie
01-18-2011, 11:03 PM
Nancy, your posts are giving me goosebumps! God is so good! So many blessings. I will be praying for both of you and specifically for a clear direction regarding the stem cell transplant.

nancy237
01-19-2011, 06:34 PM
The Dr said he is officially in remission. :carrot:

This is my Praise God Smiley :cp:

The biopsy showed no cancer cells on the bone marrow and
20 % Philidelphia Chromosome (as opposed to 85% at diagnosos)

I really don't understand the role the Chromosome plays
with the leukemia ( whether it is a cause or result of the leukemia)
The information about the chromosome is hard to find...
At Duke tomorrow I will ask more about this.

I am also going to ask if it is a partial remission because of the
20% Phil .Chromosome.

I do know that relaspes are common so keeping him in remession will still be a challenge.

sloanie
01-19-2011, 07:00 PM
:cp::cp::cp::cp::cp::cp::cp::cp:

blessedwithsarah
01-19-2011, 08:46 PM
Great news Nancy!!!!

ontarget
01-19-2011, 08:51 PM
:cp::cp::cp::cp::cp::cp:

Vickie
01-20-2011, 09:54 AM
Oh Nancy....I'm so happy for both of you!

Tejas
01-20-2011, 01:53 PM
Very good news, of course. But, you are right, there are many challenges ahead. But, enjoy this for all its worth.

Rhonda

pam920
01-20-2011, 06:17 PM
great news Nancy.

nancy237
01-20-2011, 06:48 PM
Lots of prayers were answered today...:cp:

Accoring to Duke new drugs have improved the odds of not relapsing with ALL PH+ but the best odds for cure are still doing a Stem Cell Transplant. They clearly recommended the transplant if a matched donor
can be found. He does not have a living sibling so now they go to the world wide registry to try to find a match. The race now is to find
the match and do all that needs to be done to prepare for transplant
before he relapses. He will continue his Chemo every 3 or 4 weeks to keep it in remission until we do a SCT (stem cell transplant).

I got a lot of questions answered today and feel so much better that all his doctors are on the same page. They explained the Philedelphia Chromosome more and are doing more research to be sure one of his iron reducing meds is not interfering with a drug called Gleevec that is a Chemo drug he takes everyday.. I think they will discontinue the iron
reducing drug and it makes me feel good that I asked about it. I like the way this doctor thinks & explains why he is deciding what he does.

Thanks for letting me do this thread..it helps as a sort of journaling
outlet for me also...
I know everyone is praying so please don't feel like you have to respond to every post...
Love you guys..

sloanie
01-20-2011, 07:12 PM
Hey Nancy, do you need any of us to get typed to see if we match? What is involved?

nancy237
01-20-2011, 07:34 PM
I just thought of one more thing to share and saw your post Sloan..
That made me cry just to think you would even ask that...:hug:

I think the process is for a donor to join a national registry as a willing
donor and then if they match you with someone that needs a transplant they would contact you to see if you are still willing and if the timing works ect.

My guess is that the process of being typed is involved and takes some time ,but this whole experience has raised my awareness of how many people never get a chance because they cannot find a good match. The waiting room at the transplant center was full today of families all facing the same type thing. I am going to see about being a donor as soon as we get through this.

Another thing is for everyone that can ...please give blood...
We have used lots of whole blood & platelet transfusions and
I know giving blood really does save lives...


Okay..the original reason I pulled this post back up..
Another praise I forgot to share..
The entire costs of the transplant will be covered by our primary & secondary insurance !!! We will not even have daily copays when we are
outpatient !!!

Vickie
01-21-2011, 09:55 AM
I'm so happy to hear that things are going the best they can. Prayers continue. I'm honestly not trying to get political here but Jim and I say to each other often.....Thank God for health insurance!