Scan results!

camul

Good news first, Liver and lungs clear. Tumors are not putting pressure on spinal column.Bone scan shows the tumors that are stable are the T-spine which was radiated last year, along with the tight hip and right thigh, and a few in the ribs. The c-spine, left ribs, left hip, right knee, lumbar spine, tail bone, pelvic bones, shoulder bones backbone on the left side are show metabolic activity. She had a name for it when your whole skeletal system has tumors. Her recommendation is to get another opinion from a med onco who has not treated me. She would like them to do bone biopsies on about 5 or so of the active tumors to see if I am her2 +, as some of the tumor area looks like a honeycomb with chunks out, and other areas look like tumors are on top of eachother, and she would not be surprised if it is positive. The initial was undetermined and tumors responded well when I was on herceptin (until ins realzed I was undetermined for her). She will not do more external beam rads. Most of the red cells and platelets are produced in the hios, pelvic, spine, sacrum? If she radiates other areas it could make me sicker as there would not be enough good marrow left to produce the red cells needed. So if needed, she would do Quadromet (whole body oral rads). S/E could be lower white cell count, lower red cell and platelet that could mean transfusions. It should help with pain, but no guarantee. There are risk involved. And once you have quadramet, you can no longer recieve any systemic treatments, so it also limits the possibility of other treatments that may come up. So for now, I will continue on. Wait for appt w/a new med onc. I did ask her if I am stable, she kindof laugheedand said NO! didnt I just show you all the metabolic activity? I laughed amd said I just neededd to hear it bcuz my med onc said I am stable , my tumor markers lok good.
I told her I started thinking the pain and exhaustion were in my head!
She said the scans just proved it. So, I will stay on the Aromason for 2 more months in case it is slowing down the spread.

Now I guess I just wait and see what the new med onc says!
Thanks everyone for your support. I do need it.
HUGS,
Carol

Jean 0609

Thanks for the update!

Were your ears burning this past weekend?  We were talking about you at our Hershey weekend.  I told the girls that you might just show up next year!  They were excited.

 

You continue ue to be in my daily prayers.

 

xoxo,

Jean

New Flower

Jean 0609 said:

Thanks for the update!

Were your ears burning this past weekend?  We were talking about you at our Hershey weekend.  I told the girls that you might just show up next year!  They were excited.

 

You continue ue to be in my daily prayers.

 

xoxo,

Jean

Hi Carol

I guess it is a mixed bag news. it is good that 

Carol, I know you have had a hard time with Afinitor. Have you tried 5 mg option too. I swithed from 10 to 5 mg, and it is much more manageble. It goes together with Aromosin.

I am haveing similar problem with sacrum and hip, however not ready for biopcy in those areas. If you can tolerate pain waiting for new drugs to come will be beneficial. a new drug  palbociclib (PD-0332991) expected to receive FDA approval in April of 2015

Hugs and prayers to you

Hershey girls you never posted about planning and having your party.

aisling8

New Flower said:

Hi Carol

I guess it is a mixed bag news. it is good that 

Carol, I know you have had a hard time with Afinitor. Have you tried 5 mg option too. I swithed from 10 to 5 mg, and it is much more manageble. It goes together with Aromosin.

I am haveing similar problem with sacrum and hip, however not ready for biopcy in those areas. If you can tolerate pain waiting for new drugs to come will be beneficial. a new drug  palbociclib (PD-0332991) expected to receive FDA approval in April of 2015

Hugs and prayers to you

Hershey girls you never posted about planning and having your party.

Hmmm

I've been reading all your update posts lately and your situation seems to be that you know what your body needs and it's more a matter of you finding doctors to give you what you need than the reverse. Like the thyroid stuff. You knew that intuitively and then the doctor confirmed. You already know you want to be on Herceptin, now you need someone to prove you need it to convince your insurance. It's sort of like you're the general contractor for your own project:) I hope that makes sense.

And I hope you get the cooperation you need:)

xoxo

Victoria

VickiSam

aisling8 said:

Hmmm

I've been reading all your update posts lately and your situation seems to be that you know what your body needs and it's more a matter of you finding doctors to give you what you need than the reverse. Like the thyroid stuff. You knew that intuitively and then the doctor confirmed. You already know you want to be on Herceptin, now you need someone to prove you need it to convince your insurance. It's sort of like you're the general contractor for your own project:) I hope that makes sense.

And I hope you get the cooperation you need:)

xoxo

Victoria

Update and news has provided you

with much information - good news is that there are options.  New doctor, new treatment plan and HOPE is what we all are praying for.

Continued hope, prayers and magic sprinkles

Vicki Sam

button2

Well at least you had some

Well at least you had some good news. I'm wishing you all the best for your appointment with new onc. I hope you can get on something like Herceptin, or whatever else gives you pain relief. Keep us posted. Hugs, Anna

Pixie Dust

Glad to hear from you

Camul, I pray what ever you and the ONCS decide are the right decisions for treatments and that you are no longer in pain. (HUGS)  Pixie

GlowMore

Insurance...

Wondering when you will be able to get Medicare Ins?  You show your age range in 50's...........I think all the problems that these Ins Companies give you is terrible.   Here you are fighting for your LIFE...and they want to give you a hard time over the meds?  That really SUX....

I pray for you every night Carol.....and send you hugs and encouragement....you have the very BEST attitude and you must have a totally wonderful family.   Love, Glo

camul

GlowMore said:

Insurance...

Wondering when you will be able to get Medicare Ins?  You show your age range in 50's...........I think all the problems that these Ins Companies give you is terrible.   Here you are fighting for your LIFE...and they want to give you a hard time over the meds?  That really SUX....

I pray for you every night Carol.....and send you hugs and encouragement....you have the very BEST attitude and you must have a totally wonderful family.   Love, Glo

I am on Medicare
I have uhc thru my work (longterm benefits). As my primary it was good. As a secondary they do not cover the leftovver and there were so many issues. At the same time that I became Medicare eligable, I was told by Medicare that They would not be my primary so it was part A because my uhc was thru company. My company was in the process of a buyout. We were (are) union. The new company was not, so... Benefits dept was giving wrong info based on new company. My bene's are considered a part oc Cobra on the long term, but that never came across so finnaly all was coverered.
Then I got a letter that my medical and life would be there til I am 65. Then midway thru Oct. I got a letter that my life was no longer covered (I was paaying at the crate I did as a working employee), when I called them, I was told that was in error. I can continue my life and it shoul be about the same rate. I met with the Med Life reps, it is the same rate only if you are in good health. So it went up by $370. Month to keep life ins. My medical will not cover at the University (cancer institute) bcuz I am on uhc cobra plan. So all these scans etc. if I get them run at there hosp. I have to pay 20%. If I get them at the main hosp not affiliated with the U, my ins will pay. But the U only wants to use the scans they do.
So now, I am looking into an med onco that willl do something that is not affiliated with the U.
My ins as a supplemental does not cover rso many of the eds and there are procedures that were paid on Medicare that they choose not to cover any part of when the bills ccome.
I have been paying monthly payments at 3 centers (each hosp, and my orig onco,pain doc), and even paying out 150-200 a month, in the last year I have balances btwn the 3 of over 3k.
So I have pushed back scans to every 6 mo. And now I only see med onco, and pain dr. every 2 months. There isnt much for them to do. I see the rad onco when the scans are don e and the tumors are metabolic.
That is where I am now. The med onco says ghe tumor markers are good sso I am stable, but the scans just came back showing I am metabolic in over half if my bone tumors. So what to do from here?
That is why I asked the rads onco AmI stabl? She laughed and said No. Didnt you hear me for the last 30 minutes as we wwent over the whole body scan! I was laughing and said just want to be clear when I see the med onco at the U. ( He has me on Aromason). S he said he is good, but he has to loom at the scans and see that I am not stable. That is why she does not do tumor markers. She said they are good to see if meds are working, but when the pain is worse, you show all the places you hurt and light up like a xmas tree, you are not stable.
So that is where the frustration comes from.

VickiSam

camul said:

I am on Medicare
I have uhc thru my work (longterm benefits). As my primary it was good. As a secondary they do not cover the leftovver and there were so many issues. At the same time that I became Medicare eligable, I was told by Medicare that They would not be my primary so it was part A because my uhc was thru company. My company was in the process of a buyout. We were (are) union. The new company was not, so... Benefits dept was giving wrong info based on new company. My bene's are considered a part oc Cobra on the long term, but that never came across so finnaly all was coverered.
Then I got a letter that my medical and life would be there til I am 65. Then midway thru Oct. I got a letter that my life was no longer covered (I was paaying at the crate I did as a working employee), when I called them, I was told that was in error. I can continue my life and it shoul be about the same rate. I met with the Med Life reps, it is the same rate only if you are in good health. So it went up by $370. Month to keep life ins. My medical will not cover at the University (cancer institute) bcuz I am on uhc cobra plan. So all these scans etc. if I get them run at there hosp. I have to pay 20%. If I get them at the main hosp not affiliated with the U, my ins will pay. But the U only wants to use the scans they do.
So now, I am looking into an med onco that willl do something that is not affiliated with the U.
My ins as a supplemental does not cover rso many of the eds and there are procedures that were paid on Medicare that they choose not to cover any part of when the bills ccome.
I have been paying monthly payments at 3 centers (each hosp, and my orig onco,pain doc), and even paying out 150-200 a month, in the last year I have balances btwn the 3 of over 3k.
So I have pushed back scans to every 6 mo. And now I only see med onco, and pain dr. every 2 months. There isnt much for them to do. I see the rad onco when the scans are don e and the tumors are metabolic.
That is where I am now. The med onco says ghe tumor markers are good sso I am stable, but the scans just came back showing I am metabolic in over half if my bone tumors. So what to do from here?
That is why I asked the rads onco AmI stabl? She laughed and said No. Didnt you hear me for the last 30 minutes as we wwent over the whole body scan! I was laughing and said just want to be clear when I see the med onco at the U. ( He has me on Aromason). S he said he is good, but he has to loom at the scans and see that I am not stable. That is why she does not do tumor markers. She said they are good to see if meds are working, but when the pain is worse, you show all the places you hurt and light up like a xmas tree, you are not stable.
So that is where the frustration comes from.

.. all I have to say about the insurance, Corba,

limited, unlimted, co=pays associated with your care is OMG.

It soould like a full time job for anyone.

Keeping you close in my heart, thoughts and prayers dear Carol.

Vicki Sam