Dear Amanda,
I will be thinking of you and will hold you close to my heart.
Stay strong.
Marietjie.
Amanda R :) from California - Dx 2009 - RIP March 2015
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MarietjievdMerwe
- Member
- Posts: 162
- Joined: Fri Apr 13, 2012 7:59 am
Re: Amanda R :) from California - Dx 2009
Hello and thank you for the loving posts an the caring it helps so so much!!! <3
Ok, ultrasound they see the 2cm nodule and they said it has no vascular flow! Thank god!!!
I am calling Dr Suh right now we need to take care of the bronchial met ASPS so i hope it can be done next week...
I will post back as soon as i talk to him
love and hugs to you all! <3
Ok, ultrasound they see the 2cm nodule and they said it has no vascular flow! Thank god!!!
I am calling Dr Suh right now we need to take care of the bronchial met ASPS so i hope it can be done next week...
I will post back as soon as i talk to him
love and hugs to you all! <3
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
Amanda
What glorious news.
Doing the happy dance here
Thanks for making my day as I am sure it has done for you !
Love,
Debbie
What glorious news.
Doing the happy dance here
Thanks for making my day as I am sure it has done for you !
Love,
Debbie
Debbie
Re: Amanda R :) from California - Dx 2009
Hello 
I know that was a good sign! I am also snoopy dancing hehe
Best thing is that Eric who is a great guy from Dr L office called me!!) He will call me on monday and we will make a plan
We are starting to plan to go to Detroit and not UCLA unless someone here has had Dr Suh work on them?
It is going to be expensive going to Detroit! I guess we spend 7 days of fun filled night and days in Detroit hehe Zoo every day? Anyhow, expensive ir not i want this stuff dead!
Olga did you know someone that went to Dr Suh an it went well?
I told Eric i was referred to them by Olga and Ivan other patients in our ASPS forums <3
THIS IS WHY WE ALL NEED TO TALK! So lurkers jump right in hehe <3
Has anyone had the ASPS on the bronchial in their lungs treated this way?
Yet again if we didn't talk and if i would have blindly listened to Dr's i would be in deep crap!
My Onc is a team member with me an does not order me around and say this is what we are doing i am heavily involved an thats what they are supposed to do BTW...
I share with him about our ASPS family an what and who is safe so others with ASPS that he also does see that are not in our forums will be treated with our knowledge and his an thats a powerhouse hehe
OMG i feel lifted! I feel like there is a real hope now to kill these ferz! *grin* An i will not be anything like the jaw as was wisely pointed out so bring this on!
I know that was a good sign! I am also snoopy dancing hehe
Best thing is that Eric who is a great guy from Dr L office called me!!
) He will call me on monday and we will make a plan We are starting to plan to go to Detroit and not UCLA unless someone here has had Dr Suh work on them?
It is going to be expensive going to Detroit! I guess we spend 7 days of fun filled night and days in Detroit hehe Zoo every day? Anyhow, expensive ir not i want this stuff dead!
Olga did you know someone that went to Dr Suh an it went well?
I told Eric i was referred to them by Olga and Ivan other patients in our ASPS forums <3
THIS IS WHY WE ALL NEED TO TALK! So lurkers jump right in hehe <3
Has anyone had the ASPS on the bronchial in their lungs treated this way?
Yet again if we didn't talk and if i would have blindly listened to Dr's i would be in deep crap!
My Onc is a team member with me an does not order me around and say this is what we are doing i am heavily involved an thats what they are supposed to do BTW...
I share with him about our ASPS family an what and who is safe so others with ASPS that he also does see that are not in our forums will be treated with our knowledge and his an thats a powerhouse hehe
OMG i feel lifted! I feel like there is a real hope now to kill these ferz! *grin* An i will not be anything like the jaw as was wisely pointed out so bring this on!
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
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MarietjievdMerwe
- Member
- Posts: 162
- Joined: Fri Apr 13, 2012 7:59 am
Re: Amanda R :) from California - Dx 2009
Dear Amanda!
Count me in on the happy dance! I am so glad to hear you are feeling better and as always, so positive.
Keep on smiling.
Marietjie.
Count me in on the happy dance! I am so glad to hear you are feeling better and as always, so positive.
Keep on smiling.
Marietjie.
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Amanda,
This is all very good news and I too am sharing the great relief, joy, and happy dancing Since the 2 Cm. nodule in your adrenal gland has no vascular flow, do the doctors think that it is a cyst or some other type of benign lesion and will it require any type of treatment? I am so grateful that things are moving forward with Dr. Littrup who I personally definitely think is your best choice for your lung Cryo since he has the most experience especially with ASPS patients. We found that there unfortunately wasn't too much to do in Detroit, but we were there during the cold winter months for both of Brittany's Cryoablations with Dr. Littrup, and I am sure there is much more to do there in the summer. There is a beautiful huge park (which I can't remember the name of) located on the Detroit River which we really enjoyed visiting, and there will be many more park activities open in the summer than there were in the winter when we were there. There is hospital housing available for Karmanos Medical Center patients and it is located adjacent to and within a very short and easy walking distance from Karmanos. Unfortunately Karmanos and the hospital housing facility are located in a not very good part of Detroit and we were warned to not wander around after dark 
. When we were there, there were no conveniently located restaurants or grocery stores, so we rented a car in able to drive to get food. For Brittany's second Cryo we opted to stay in a lovely and reasonably priced Bed and Breakfast not too far from the medical center, but unfortunately I don't think that it is still in operation. Ivan and Olga will probably have some good housing recommendations for you. I will be anxious to hear when your procedure is scheduled and when you will be traveling to Detroit. In the meantime, relax and enjoy the beautiful California summer weather knowing that everything is moving in a positive direction in your courageous ASPS battle.
With happy hugs, special caring thoughts, healing wishes, much love, and continued Hope,
Bonni
This is all very good news and I too am sharing the great relief, joy, and happy dancing
Since the 2 Cm. nodule in your adrenal gland has no vascular flow, do the doctors think that it is a cyst or some other type of benign lesion and will it require any type of treatment? I am so grateful that things are moving forward with Dr. Littrup who I personally definitely think is your best choice for your lung Cryo since he has the most experience especially with ASPS patients. We found that there unfortunately wasn't too much to do in Detroit, but we were there during the cold winter months for both of Brittany's Cryoablations with Dr. Littrup, and I am sure there is much more to do there in the summer. There is a beautiful huge park (which I can't remember the name of) located on the Detroit River which we really enjoyed visiting, and there will be many more park activities open in the summer than there were in the winter when we were there. There is hospital housing available for Karmanos Medical Center patients and it is located adjacent to and within a very short and easy walking distance from Karmanos. Unfortunately Karmanos and the hospital housing facility are located in a not very good part of Detroit and we were warned to not wander around after dark . When we were there, there were no conveniently located restaurants or grocery stores, so we rented a car in able to drive to get food. For Brittany's second Cryo we opted to stay in a lovely and reasonably priced Bed and Breakfast not too far from the medical center, but unfortunately I don't think that it is still in operation. Ivan and Olga will probably have some good housing recommendations for you. I will be anxious to hear when your procedure is scheduled and when you will be traveling to Detroit. In the meantime, relax and enjoy the beautiful California summer weather knowing that everything is moving in a positive direction in your courageous ASPS battle.With happy hugs, special caring thoughts, healing wishes, much love, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
Amanda, I personally do not know any Dr.Suh patients but he is well known/published dr. In general I agree with Bonni that Dr.Littrup is the best choice but we live in a real world and you have to decide yourself. Is the insurance going to pay for Dr.Littrup?
There is unfortunately no hospital housing available at the Karmanos Medical Center anymore but instead they got for the patients a very good rate at the Holiday Inn express downtown which is a much better area for the patients - there are few good quality moderately priced restaurants and stores within walking distance plus they have a breakfast incl. at the hotel, free shuttle to the hospital and other places in the vicinity etc. I was disappointed at first when they eliminated the patient accommodation place at the Karmanos but now I feel that in most cases downtown is a better place to stay (except the most complicated cases when proximity to hospital after the procedure is safer in case of the post procedure complications, but they tend to keep such patients overnight).
There is unfortunately no hospital housing available at the Karmanos Medical Center anymore but instead they got for the patients a very good rate at the Holiday Inn express downtown which is a much better area for the patients - there are few good quality moderately priced restaurants and stores within walking distance plus they have a breakfast incl. at the hotel, free shuttle to the hospital and other places in the vicinity etc. I was disappointed at first when they eliminated the patient accommodation place at the Karmanos but now I feel that in most cases downtown is a better place to stay (except the most complicated cases when proximity to hospital after the procedure is safer in case of the post procedure complications, but they tend to keep such patients overnight).
Olga
Re: Amanda R :) from California - Dx 2009
Hello
Thank you Marj an Bonnie <3
Olga, i hope they take my insurances :/ They are both PPO Cigna an Blue cross of California an i have Medicare also *given early to me* I will call again an make sure right now <3
*UPDATE* i called an left a msg for Barbara to ask an remind then of my cell number an wish to speak to the Dr L
I know though he is swamped! I think his nurse can answer my questions though also
*UPDATE AGAIN* hehe
I am leaving a msg for the insurance area of the hospital to call me back also
I know its weird but i am scarred an excited about starting this voyage in the fight! I am also looking forward to meeting Dr L because of every thing everyone has said about him.
I pray he an the hospital take at least one form of my insurances.
We pay a lot for the Cigna an i was blessed to work in film an was union so i have that an now medicare because i asked for it early.
Thank you Marj an Bonnie <3
Olga, i hope they take my insurances :/ They are both PPO Cigna an Blue cross of California an i have Medicare also *given early to me* I will call again an make sure right now <3
*UPDATE* i called an left a msg for Barbara to ask an remind then of my cell number an wish to speak to the Dr L
I know though he is swamped! I think his nurse can answer my questions though also
*UPDATE AGAIN* hehe
I am leaving a msg for the insurance area of the hospital to call me back also
I know its weird but i am scarred an excited about starting this voyage in the fight! I am also looking forward to meeting Dr L because of every thing everyone has said about him.
I pray he an the hospital take at least one form of my insurances.
We pay a lot for the Cigna an i was blessed to work in film an was union so i have that an now medicare because i asked for it early.
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
Hello,
Well, it seems Dr L would rather i not go to Detroit an be sen in Ca at UCLA
I spoke with DR Abton an he will be my doctor he has a great heart.
He said he would like to do the focused radiation on the met on the bronial an then crro to it. But,i am worried it will make a hole int he bronchial
Bonnie, didn't you say to not do this
I am not feeling so positive tonight in fact feeling very sad an almost beaten!
I will post back when i am not feeling like this <3
Well, it seems Dr L would rather i not go to Detroit an be sen in Ca at UCLA
I spoke with DR Abton an he will be my doctor he has a great heart.
He said he would like to do the focused radiation on the met on the bronial an then crro to it. But,i am worried it will make a hole int he bronchial
Bonnie, didn't you say to not do this
I am not feeling so positive tonight in fact feeling very sad an almost beaten!
I will post back when i am not feeling like this <3
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
Hi Amanda
Why radio along with cryo?
Does dr L know the dr in California ?
Write when you can
Love
Debbie
Why radio along with cryo?
Does dr L know the dr in California ?
Write when you can
Love
Debbie
Debbie
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Amanda R :) from California - Dx 2009
Dear Amanda,
I am so saddened by your yesterday's disappointment and sadness and Hope that today has brought you a brighter and more positive perspective. I am surprised and perplexed by Dr. Littrup's recommendation that you seek Cryoablation treatment in California instead of going to Detroit for treatment with him. Did he offer any explanation for his decision? Obviously he must feel that Dr. Suh or Dr. Abton are capable of providing good Cryo treatment for you so he may be trying to be considerate of the travel and housing expenses, time, and physical stress that going to Detroit would create for you. I don't personally understand/know why Dr. Abton is proposing a focussed radiation treatment to your bronchial met prior to the Cryoablation treatment, but I don't recall ever having advised against this as it is not anything that I was aware of as a proposed treatment in relation to lung Cryoablation. It will be very important for you to research and to ask as many questions as you need to about Dr. Abton's ASPS lung met Cryoablation experience and the proposed procedure so that you feel confident before undergoing the procedure. I Hope that once your concerns and questions are satisfactorily addressed and answered that the procedure can be scheduled sometime soon so that you can have the procedure, recover, and then move forward to enjoying your summer. Take care dear Amanda and have as good and relaxing weekend as possible knowing that things are moving forward in a positive direction towards treatment of your largest and most concerning lung mets.
With special caring hugs, positive thoughts, healing wishes, much love, and continued Hope,
Bonni
I am so saddened by your yesterday's disappointment and sadness and Hope that today has brought you a brighter and more positive perspective. I am surprised and perplexed by Dr. Littrup's recommendation that you seek Cryoablation treatment in California instead of going to Detroit for treatment with him. Did he offer any explanation for his decision? Obviously he must feel that Dr. Suh or Dr. Abton are capable of providing good Cryo treatment for you so he may be trying to be considerate of the travel and housing expenses, time, and physical stress that going to Detroit would create for you. I don't personally understand/know why Dr. Abton is proposing a focussed radiation treatment to your bronchial met prior to the Cryoablation treatment, but I don't recall ever having advised against this as it is not anything that I was aware of as a proposed treatment in relation to lung Cryoablation. It will be very important for you to research and to ask as many questions as you need to about Dr. Abton's ASPS lung met Cryoablation experience and the proposed procedure so that you feel confident before undergoing the procedure. I Hope that once your concerns and questions are satisfactorily addressed and answered that the procedure can be scheduled sometime soon so that you can have the procedure, recover, and then move forward to enjoying your summer. Take care dear Amanda and have as good and relaxing weekend as possible knowing that things are moving forward in a positive direction towards treatment of your largest and most concerning lung mets.
With special caring hugs, positive thoughts, healing wishes, much love, and continued Hope,
Bonni
Re: Amanda R :) from California - Dx 2009
Just a note to let you all know i am waiting to hear from the UCLA doctor an i left a msg to set the appt up...
No i am NOT in a good an positive space...
I am very upset at Dr L an the lack of even caring enough to call me back or my Dr , I was am still am very frightened an he was almost like a super hero an knowing he would maybe be my Onc made me feel safe... so the lack or care crushed me ...
I have less things in my lungs and i am still confused why he would not see me in Detroit.. i am left very let down an abandoned to be honest an totally crushed
Not even Barbra responded to me again as she said she would and that left me with a clear picture they just didn't care enough to let me know why they would or wouldn't treat me
I didn't call to much i was kind i have a lot of insurances so i have no idea why they said no to me... maybe he can't treat me? an that also frightens me! Anyhow, i was and still am very hurt by this an i am sure it is very evident by this post!
I feel like an idiot also i told my Onc i only wanted Dr L he was the ASPS guy
I will wait for Dr Abton at UCLA an then let him be my Dr he took my calls an talked to me an really showed he cared! This to me means a lot...
I will post back after i have my first treatment and i still have no idea when it will be...
No i am NOT in a good an positive space...
I am very upset at Dr L an the lack of even caring enough to call me back or my Dr , I was am still am very frightened an he was almost like a super hero an knowing he would maybe be my Onc made me feel safe... so the lack or care crushed me
... I have less things in my lungs and i am still confused why he would not see me in Detroit.. i am left very let down an abandoned to be honest an totally crushed
Not even Barbra responded to me again as she said she would and that left me with a clear picture they just didn't care enough to let me know why they would or wouldn't treat me
I didn't call to much i was kind i have a lot of insurances so i have no idea why they said no to me... maybe he can't treat me? an that also frightens me! Anyhow, i was and still am very hurt by this an i am sure it is very evident by this post!
I feel like an idiot also i told my Onc i only wanted Dr L he was the ASPS guy
I will wait for Dr Abton at UCLA an then let him be my Dr he took my calls an talked to me an really showed he cared! This to me means a lot...
I will post back after i have my first treatment and i still have no idea when it will be...
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
HI Amanda
I am sorry that there has been little communication to you about the whys and what fors from Detroit.
I agree with Bonnis note below about doctor Littrup's reasoning of travel etc as you have just been through a very serious jaw surgery.
Also, some lung tumors are located on or near airways and respond better to SBRT and then cyro. However you do deserve an explanation regardless.
I hope that Dr. Littrups office gives you a call soon to atleast give you a piece of mind.
I hope your UCLA onc shows you the same consideration soon as well.
In the mean time give yourself a hug and take joy in your son and husbands loving light.
Love
Debbie
I am sorry that there has been little communication to you about the whys and what fors from Detroit.
I agree with Bonnis note below about doctor Littrup's reasoning of travel etc as you have just been through a very serious jaw surgery.
Also, some lung tumors are located on or near airways and respond better to SBRT and then cyro. However you do deserve an explanation regardless.
I hope that Dr. Littrups office gives you a call soon to atleast give you a piece of mind.
I hope your UCLA onc shows you the same consideration soon as well.
In the mean time give yourself a hug and take joy in your son and husbands loving light.
Love
Debbie
Bonni Hess wrote:Dear Amanda,
I am so saddened by your yesterday's disappointment and sadness and Hope that today has brought you a brighter and more positive perspective. I am surprised and perplexed by Dr. Littrup's recommendation that you seek Cryoablation treatment in California instead of going to Detroit for treatment with him. Did he offer any explanation for his decision? Obviously he must feel that Dr. Suh or Dr. Abton are capable of providing good Cryo treatment for you so he may be trying to be considerate of the travel and housing expenses, time, and physical stress that going to Detroit would create for you. I don't personally understand/know why Dr. Abton is proposing a focussed radiation treatment to your bronchial met prior to the Cryoablation treatment, but I don't recall ever having advised against this as it is not anything that I was aware of as a proposed treatment in relation to lung Cryoablation. It will be very important for you to research and to ask as many questions as you need to about Dr. Abton's ASPS lung met Cryoablation experience and the proposed procedure so that you feel confident before undergoing the procedure. I Hope that once your concerns and questions are satisfactorily addressed and answered that the procedure can be scheduled sometime soon so that you can have the procedure, recover, and then move forward to enjoying your summer. Take care dear Amanda and have as good and relaxing weekend as possible knowing that things are moving forward in a positive direction towards treatment of your largest and most concerning lung mets.
With special caring hugs, positive thoughts, healing wishes, much love, and continued Hope,
Bonni
Debbie
Re: Amanda R :) from California - Dx 2009
I can fly to Detroit and the jaw surgery they don't even know about yet and i am cleared for surgery either way i am 6 months out ...
I have two PPo insurances an the main one would have payed for this because of his back ground
I do not think i will ever do SBRT in any form...
The UCLA Onc said SBRT not Bonnie...
Also Barbara when i did talk to her said no SBRT
An this Onc has not done ASPS i don't think...
I don't think he cares if he did he would have called me
At this point i am upset an frustrated! I am starting to think i will not do any of this and go towards natural treatments... or open lung surgery ...
I have two PPo insurances an the main one would have payed for this because of his back ground
I do not think i will ever do SBRT in any form...
The UCLA Onc said SBRT not Bonnie...
Also Barbara when i did talk to her said no SBRT
An this Onc has not done ASPS i don't think...
I don't think he cares if he did he would have called me
At this point i am upset an frustrated! I am starting to think i will not do any of this and go towards natural treatments... or open lung surgery ...
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Amanda R :) from California - Dx 2009
Amanda, in our experience with Dr.Littrup he almost never calls, it is usually an e-mail from him or Barb. In what form did you get an answer from him that he recommends to get treated locally? Can you copy and send to me via PM (use an User control panel link above) their answer?
Olga