Thank you 'F' and Dotty. I am so very grateful to be able to share some good and encouraging news for a change, and to have the wonderful strengthening support, caring, and friendship of those of you with whom we share this very difficult roller coaster ride with ASPS.
I am so glad that Jordanne is tolerating the Cediranib so well thus far since resuming it after her month off of it for surgery and recovery, and that she is back to being able to enjoy her young Life again. My special prayers and greatest Hope are with her for continued tolerable side effects from the medication, and a very successful response and outcome to the treatment.
I will be anxiously awaiting the next updates for both Jordanne and 'K', and holding very tight to Hope for good news for both of them.
Take care and have a very good and relaxing weekend.
With special caring thoughts and continued Hope,
Bonni
Brittany on Cediranib trial Phase 1 in Edmonton
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
-
Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Dear ASPS Community Friends,
Today we received and read with more great celebration and increased Hope the incredible results of Dr. Sawyer's close review with the radiologist of Brittany's most recent April 8th pancreatic CT scan in reference to the notation on the radiolgist report that the pancreas appears "unremarkable". The amazing and extremely encouraging conclusion of Dr. Sawyer's and the radiologist's review is as follows: "We could not see the lump. The pancreas does indeed look normal. The original CT from April 2009 is on some server and we are downloading it to compare the most recent with the original. But indeed the pancreas looks normal, maybe we will see something if we can see where it was in the beginning, but I am hoping that if we see anything it is going to be small." Thankfully, with the exception of the usual Cediranib side effect symptoms of fatigue, diarrhea, hand/foot syndrome, and lack of appetite, Brittany is feeling alright and has not yet experienced another severe vomiting episode,
Our continued very best wishes and greatest Hope for treatment success and minimal well tolerated side effects are with all of the other ASPS patients who are currently receiving Cediranib treatment, and we are anxiously awaiting your Board updates on your treatment experiences and results. This shared anecdotal treatment information is so very important to all of us. In the meantime, please take care everyone and have a relaxing and beautiful Springtime weekend.
With special caring thoughts and continued Hope,
Bonni
Today we received and read with more great celebration and increased Hope the incredible results of Dr. Sawyer's close review with the radiologist of Brittany's most recent April 8th pancreatic CT scan in reference to the notation on the radiolgist report that the pancreas appears "unremarkable". The amazing and extremely encouraging conclusion of Dr. Sawyer's and the radiologist's review is as follows: "We could not see the lump. The pancreas does indeed look normal. The original CT from April 2009 is on some server and we are downloading it to compare the most recent with the original. But indeed the pancreas looks normal, maybe we will see something if we can see where it was in the beginning, but I am hoping that if we see anything it is going to be small." Thankfully, with the exception of the usual Cediranib side effect symptoms of fatigue, diarrhea, hand/foot syndrome, and lack of appetite, Brittany is feeling alright and has not yet experienced another severe vomiting episode,
Our continued very best wishes and greatest Hope for treatment success and minimal well tolerated side effects are with all of the other ASPS patients who are currently receiving Cediranib treatment, and we are anxiously awaiting your Board updates on your treatment experiences and results. This shared anecdotal treatment information is so very important to all of us. In the meantime, please take care everyone and have a relaxing and beautiful Springtime weekend.
With special caring thoughts and continued Hope,
Bonni
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Hello Bonnie! <3
This is great news!!! I have such hopes for this drug for everyone and so do the oncs i talk to about it!
I hope that you are all having a wonderful spring and are relaxing and taking a huge realiving breath that you all so deserve after this wonderful newsI
This is great news!!! I have such hopes for this drug for everyone and so do the oncs i talk to about it!
I hope that you are all having a wonderful spring and are relaxing and taking a huge realiving breath that you all so deserve after this wonderful newsI
“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: Brittany on Cediranib trial Phase 1 in Edmonton
I am celebrating with you and praising God for the good news about Brits pancreatic met.
We are hoping to see Jordannes' oncologist this week because no one ever went over her last scans with us, so when I read them a little over a week ago, I was concerned to see references to focal uptake in her right femur and left hip joint on her PT scan, although the CT scan did not show anything. I don't know all the medical lingo yet, but I don't like the word "suspicious." I expect that Dr. Lonegran can give us a lot clearer picture about what's going on. Hopefully, the Cediranib is taking care of any thing suspicious. I continue to entrust her to the Lord and pray for complete healing of my baby girl and yours as well. Give Brittany a celebratory hug for me.
Dotty
We are hoping to see Jordannes' oncologist this week because no one ever went over her last scans with us, so when I read them a little over a week ago, I was concerned to see references to focal uptake in her right femur and left hip joint on her PT scan, although the CT scan did not show anything. I don't know all the medical lingo yet, but I don't like the word "suspicious." I expect that Dr. Lonegran can give us a lot clearer picture about what's going on. Hopefully, the Cediranib is taking care of any thing suspicious. I continue to entrust her to the Lord and pray for complete healing of my baby girl and yours as well. Give Brittany a celebratory hug for me.
Dotty
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Dear Dotty,
Thank you for sharing the joy of the very encouraging news about Brittany's pancreatic met with your kind words and so much special happiness and caring. Thankfully we also received additional good news from her last Wednesday's annual bone scan at Seattle Cancer Care Alliance which showed no bone mets, so our celebration and strengthened Hope continue.
Regarding your concerns about the radiologist report from Jordanne's most recent scans making "references to focal uptake in her right femur and left hip joint on her PT scan", Brittany's bone scan also said that there is:
"Mildly increased tracer uptake in the soft tissues of the left thigh and the medial aspect of left femur. They are most likely related to radiation related changes. Mildly increased tracer uptake in the proximal mid shaft on the left tibia. This is also likely related to prior radiation/bone infarction." Brittany's left thigh is where her primary tumor was resected and treated with post-surgery radiation, and her left tibia is where her tibia met was treated with RFA. If Jordanne has had prior surgery/treatment to her right femur and left hip joint, perhaps that is the basis for the PET uptake in these areas, but I agree that it is very important that you review and discuss the scans and report with Jordanne's oncologist so that he can help clarify the situation for you. I am holding VERY tight to Hope that there are no femur or hip joint tumors and no tumor activity, and I will be prayerfully awaiting your update after you meet with the oncologist. In the meantime, please give Jordanne and yourself special hugs from me and my family, and know that we are all holding Jordanne and your family very close in our hearts and our most special thoughts and prayers.
With deepest caring and continued Hope,
Bonni
Thank you for sharing the joy of the very encouraging news about Brittany's pancreatic met with your kind words and so much special happiness and caring. Thankfully we also received additional good news from her last Wednesday's annual bone scan at Seattle Cancer Care Alliance which showed no bone mets, so our celebration and strengthened Hope continue.
Regarding your concerns about the radiologist report from Jordanne's most recent scans making "references to focal uptake in her right femur and left hip joint on her PT scan", Brittany's bone scan also said that there is:
"Mildly increased tracer uptake in the soft tissues of the left thigh and the medial aspect of left femur. They are most likely related to radiation related changes. Mildly increased tracer uptake in the proximal mid shaft on the left tibia. This is also likely related to prior radiation/bone infarction." Brittany's left thigh is where her primary tumor was resected and treated with post-surgery radiation, and her left tibia is where her tibia met was treated with RFA. If Jordanne has had prior surgery/treatment to her right femur and left hip joint, perhaps that is the basis for the PET uptake in these areas, but I agree that it is very important that you review and discuss the scans and report with Jordanne's oncologist so that he can help clarify the situation for you. I am holding VERY tight to Hope that there are no femur or hip joint tumors and no tumor activity, and I will be prayerfully awaiting your update after you meet with the oncologist. In the meantime, please give Jordanne and yourself special hugs from me and my family, and know that we are all holding Jordanne and your family very close in our hearts and our most special thoughts and prayers.
With deepest caring and continued Hope,
Bonni
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Dear ASPS Community Friends,
As some of you may have read last week in the "Bonni in Hospital" topic in the Personal Update section on this Board, I suffered some serious injuries in a fall which greatly restricts my ability to spend very much time on the computer, but I wanted to write an update on the concerning results of Brittany's last Friday's fourteen month Cediranib status scans which showed a possible new 1.4 cm. lesion in her liver located very close to the large portal vein. Dr Sawyer has now returned from the ASCO Conference and after close review of the scans with a radiologist who he highly respects, he is not convinced that the lesion is a metastasis. He said that "there is a spot, but that area of the liver is notorious for what is called focal fat sparing, it is right along the portal vein." Dr. Sawyer and the radiologist have suggested that we repeat the CT scan and do a concurrent ultrasound at the same time during Brittany's next Clinical Trial visit in Edmonton in early July. He said that if a metastasis cannot be seen, "it would argue strongly against it being a metastasis. As well everything else is stable which argues against this being a true met; now when something eventually misbehaves and hopefully that is some time in the future and not now, it could start with one spot misbehaving. But this is in an area that this is prone to give false reads. Brittany should continue on the medication." We are greatly relieved and cautiously optimistic by Dr. Sawyer's highly respected opinion that the lesion may not be a metastatic tumor, but we of course remain concerned until a more definitive determination can be made. In the meantime, we have scheduled Brittany for a brain and spinal MRI in Seattle on next Friday, June 18th as it will have been three and a half months since her March 2nd scans. We will meet with her radiation oncologist to discuss the results on Monday, June 21st, and will Hopefully be able to update this Board with good news of continued stable disease in Brittany's brain and spine. I would like to continue to encourage all of those who are participating in the Cediranib Clinical Trial to regularly update their treatment information and scan results on this Forum, as this shared anecdtoal information is so vitally important to all of us who are so closely following this promising new treatment. Please take care everyone, have a beautiful summer, and keep in touch as your time and situation allow.
With special caring thoughts and continued Hope,
Bonni
As some of you may have read last week in the "Bonni in Hospital" topic in the Personal Update section on this Board, I suffered some serious injuries in a fall which greatly restricts my ability to spend very much time on the computer, but I wanted to write an update on the concerning results of Brittany's last Friday's fourteen month Cediranib status scans which showed a possible new 1.4 cm. lesion in her liver located very close to the large portal vein. Dr Sawyer has now returned from the ASCO Conference and after close review of the scans with a radiologist who he highly respects, he is not convinced that the lesion is a metastasis. He said that "there is a spot, but that area of the liver is notorious for what is called focal fat sparing, it is right along the portal vein." Dr. Sawyer and the radiologist have suggested that we repeat the CT scan and do a concurrent ultrasound at the same time during Brittany's next Clinical Trial visit in Edmonton in early July. He said that if a metastasis cannot be seen, "it would argue strongly against it being a metastasis. As well everything else is stable which argues against this being a true met; now when something eventually misbehaves and hopefully that is some time in the future and not now, it could start with one spot misbehaving. But this is in an area that this is prone to give false reads. Brittany should continue on the medication." We are greatly relieved and cautiously optimistic by Dr. Sawyer's highly respected opinion that the lesion may not be a metastatic tumor, but we of course remain concerned until a more definitive determination can be made. In the meantime, we have scheduled Brittany for a brain and spinal MRI in Seattle on next Friday, June 18th as it will have been three and a half months since her March 2nd scans. We will meet with her radiation oncologist to discuss the results on Monday, June 21st, and will Hopefully be able to update this Board with good news of continued stable disease in Brittany's brain and spine. I would like to continue to encourage all of those who are participating in the Cediranib Clinical Trial to regularly update their treatment information and scan results on this Forum, as this shared anecdtoal information is so vitally important to all of us who are so closely following this promising new treatment. Please take care everyone, have a beautiful summer, and keep in touch as your time and situation allow.
With special caring thoughts and continued Hope,
Bonni
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Bonni, I hope that you are getting better. I have a question re. this recent finding - did they compare this specific area to the previous scan and if they did, what they see now on the previous scan, any signs of this thing being there then? I was perplexed with the size of the suspected liver met, as it would have been rather fast growing - grow from noting to 14 mm? What was the interval between these scans?
Olga
Re: Brittany on Cediranib trial Phase 1 in Edmonton
I had this too 7 months ago.
Suddently i had a 1.4cm spot on liver... My onc took the scans to a convention and reviewed em, comparing em to previous scans. Got a letter that it was false alarm. A later ultra sound confirmed it.
This was while i was on chemo, and as all know, in my case, the chemo had affect on lung mets, so it was odd to get a 1.4cm liver met within two months.
I hope they find, that this has nothing to do with ASPS, and hope you recover from your accident soon.
Suddently i had a 1.4cm spot on liver... My onc took the scans to a convention and reviewed em, comparing em to previous scans. Got a letter that it was false alarm. A later ultra sound confirmed it.
This was while i was on chemo, and as all know, in my case, the chemo had affect on lung mets, so it was odd to get a 1.4cm liver met within two months.
I hope they find, that this has nothing to do with ASPS, and hope you recover from your accident soon.
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Didn't Mario also suddenly find something on his liver ? I hope he lets us know what they think it is..
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Dear ASPS Community Friends,
My broken ribs and fractured vertebrae continue to make it very difficult/painful for me to sit at the computer to type, but I am closely following everyone's updates and responses, and my most caring thoughts and best wishes are with all of you. I will try to respond to everyone when I am able, but in the meantime I wanted to post a quick update on Brittany,
Brittany thoughtfully drove from Washington last Wednesday to be here with us in Montana to help me during my recovery, but heartbreakingly last Saturday she experienced another sudden onset of severe uncontrollable vomiting which required two days of hospitalization and IV rehydration and anti-nausea meds to stabilize her. She was discharged from the hospital on Monday and thankfully she is now feeling much better, so she resumed taking her Cediranib medication today. The severe vomiting episode was probably the result of the toxic build-up of the Cediranib in Brittany's body like she has experienced several times during her fourteen months of Cediranib treatment, and which seems to occur every two to three months. Has anyone else on this Board who is receiving Cediranib treatment experienced these type of periodic severe vomiting episodes? I must close for now, but will Hopefully be able to update with good news of no new tumors from Brittany's Friday's brain and spinal MRI's which we will receive the results of next Monday. In the meantime, please take care everyone and know that I am thinking of all of you with deepest caring although I am unable to write to you individually right now.
With special caring thoughts and continued Hope,
Bonni
My broken ribs and fractured vertebrae continue to make it very difficult/painful for me to sit at the computer to type, but I am closely following everyone's updates and responses, and my most caring thoughts and best wishes are with all of you. I will try to respond to everyone when I am able, but in the meantime I wanted to post a quick update on Brittany,
Brittany thoughtfully drove from Washington last Wednesday to be here with us in Montana to help me during my recovery, but heartbreakingly last Saturday she experienced another sudden onset of severe uncontrollable vomiting which required two days of hospitalization and IV rehydration and anti-nausea meds to stabilize her. She was discharged from the hospital on Monday and thankfully she is now feeling much better, so she resumed taking her Cediranib medication today. The severe vomiting episode was probably the result of the toxic build-up of the Cediranib in Brittany's body like she has experienced several times during her fourteen months of Cediranib treatment, and which seems to occur every two to three months. Has anyone else on this Board who is receiving Cediranib treatment experienced these type of periodic severe vomiting episodes? I must close for now, but will Hopefully be able to update with good news of no new tumors from Brittany's Friday's brain and spinal MRI's which we will receive the results of next Monday. In the meantime, please take care everyone and know that I am thinking of all of you with deepest caring although I am unable to write to you individually right now.
With special caring thoughts and continued Hope,
Bonni
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Dear ASPS Community Friends,
With great relief and strengthened Hope we received very good news today from Brittany's last Friday's three month brain and spinal MRI scans which thankfully showed continued stable disease in her brain and spine with no new brain mets or spinal mets. We are now nervously awaiting Brittany's June 30th specialized liver CT scan and ultrasound in Edmonton to try to determine if the new 1.4 cm. liver lesion seen on her June 3rd scans is a tumor or fatty tissue deposit. We will meet with Dr. Sawyer on July 2nd to review the results of the scans, and are holding VERY tight to Hope that the specialized scans will show that the new lesion is NOT a tumor, and that it is no longer there or at least just something benign. As always, I will try to update this Board as soon as possible with the results. In the meantime, please take care everyone, enjoy the summer, and keep in touch with the Board as you are able.
With special caring thoughts and continued Hope,
Bonni
With great relief and strengthened Hope we received very good news today from Brittany's last Friday's three month brain and spinal MRI scans which thankfully showed continued stable disease in her brain and spine with no new brain mets or spinal mets. We are now nervously awaiting Brittany's June 30th specialized liver CT scan and ultrasound in Edmonton to try to determine if the new 1.4 cm. liver lesion seen on her June 3rd scans is a tumor or fatty tissue deposit. We will meet with Dr. Sawyer on July 2nd to review the results of the scans, and are holding VERY tight to Hope that the specialized scans will show that the new lesion is NOT a tumor, and that it is no longer there or at least just something benign. As always, I will try to update this Board as soon as possible with the results. In the meantime, please take care everyone, enjoy the summer, and keep in touch with the Board as you are able.
With special caring thoughts and continued Hope,
Bonni
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Dear ASPS Community Friends,
It is with great relief and happiness in my heart that I am writing to update the VERY good news results of Brittany's Wednesday's special liver MRI in Edmonton. The radiologist report which we closely reviewed with Dr. Sawyer yesterday thankfully definitively diagnoses Brittany's liver lesion which was seen on her June 3rd CT scan as a BENIGN! "focal area of fat deposition" (also called focal fat sparing) which is apparently somewhat common in the liver and especially with patients undergoing chemo treatment. This was much needed good news because if the lesion would have been a tumor, it would have indicated disease progression after fourteen months of stability and tumor shrinkage and thus threatened Brittany's continued participation in the Cediranib Clinical Trial, and also because yesterday was the heartbreaking fifth anniversary of the devastating loss of our beloved oldest son Tate in a tragic vehicle accident. Brittany's next Clinical Trial status chest/abdominal/pelvic CT scans are scheduled in Edmonton on July 29th and Hopefully I will be able to update with continued good news following her results appointment with Dr. sawyer on July 30th. In the meantime, my continued best wishes and special caring are with all of you. Take care everyone and enjoy a wonderful July in the summer sunshine.
With special caring thoughts and continued Hope,
Bonni
It is with great relief and happiness in my heart that I am writing to update the VERY good news results of Brittany's Wednesday's special liver MRI in Edmonton. The radiologist report which we closely reviewed with Dr. Sawyer yesterday thankfully definitively diagnoses Brittany's liver lesion which was seen on her June 3rd CT scan as a BENIGN! "focal area of fat deposition" (also called focal fat sparing) which is apparently somewhat common in the liver and especially with patients undergoing chemo treatment. This was much needed good news because if the lesion would have been a tumor, it would have indicated disease progression after fourteen months of stability and tumor shrinkage and thus threatened Brittany's continued participation in the Cediranib Clinical Trial, and also because yesterday was the heartbreaking fifth anniversary of the devastating loss of our beloved oldest son Tate in a tragic vehicle accident. Brittany's next Clinical Trial status chest/abdominal/pelvic CT scans are scheduled in Edmonton on July 29th and Hopefully I will be able to update with continued good news following her results appointment with Dr. sawyer on July 30th. In the meantime, my continued best wishes and special caring are with all of you. Take care everyone and enjoy a wonderful July in the summer sunshine.
With special caring thoughts and continued Hope,
Bonni
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Hello again,
I forgot to mention that a liver MRI was done instead of the previously scheduled CT scan and specialized ultrasound because
Dr. Sawyer and the radiologist felt that the ultrasound can be subject to operator error as opposed to the more controlled MRI, and that another CT scan would just expose Brittany to unneccesary additional radiation and it would only show if there was increased growth of the lesion from a month ago as opposed to defining what the lesion was as the MRI was able to do. Based on the results of the liver MRI which thankfully ruled out the lesion being a tumor, Brittany will now continue on her 30 mg Cediranib dosage.
With more special caring thoughts for everyone and continued Hope,
Bonni
I forgot to mention that a liver MRI was done instead of the previously scheduled CT scan and specialized ultrasound because
Dr. Sawyer and the radiologist felt that the ultrasound can be subject to operator error as opposed to the more controlled MRI, and that another CT scan would just expose Brittany to unneccesary additional radiation and it would only show if there was increased growth of the lesion from a month ago as opposed to defining what the lesion was as the MRI was able to do. Based on the results of the liver MRI which thankfully ruled out the lesion being a tumor, Brittany will now continue on her 30 mg Cediranib dosage.
With more special caring thoughts for everyone and continued Hope,
Bonni
Re: Brittany on Cediranib trial Phase 1 in Edmonton
This is so nice to hear! Im very happy for you guysBonni Hess wrote:Hello again,
I forgot to mention that a liver MRI was done instead of the previously scheduled CT scan and specialized ultrasound because
Dr. Sawyer and the radiologist felt that the ultrasound can be subject to operator error as opposed to the more controlled MRI, and that another CT scan would just expose Brittany to unneccesary additional radiation and it would only show if there was increased growth of the lesion from a month ago as opposed to defining what the lesion was as the MRI was able to do. Based on the results of the liver MRI which thankfully ruled out the lesion being a tumor, Brittany will now continue on her 30 mg Cediranib dosage.
With more special caring thoughts for everyone and continued Hope,
Bonni
When it comes to the liver, its often a combination between MR, CT and Ultrasound.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Brittany on Cediranib trial Phase 1 in Edmonton
Dear Anders,
Thank you for sharing the joy of our good news with so much special kindness and happiness. Thankfully only the liver MRI was needed for Dr.Sawyer and the radiologist to be able to definitively rule out tumor.
Welcome Home from your trip to Germany for your second successful lung surgery with Dr. Rolle, and very best wishes for your continued healing and speedy recovery. Take care, enjoy a very happy and relaxing summer, and keep the Board updated as you are able.
With special caring thoughs and continued Hope,
Bonni
Thank you for sharing the joy of our good news with so much special kindness and happiness. Thankfully only the liver MRI was needed for Dr.Sawyer and the radiologist to be able to definitively rule out tumor.
Welcome Home from your trip to Germany for your second successful lung surgery with Dr. Rolle, and very best wishes for your continued healing and speedy recovery. Take care, enjoy a very happy and relaxing summer, and keep the Board updated as you are able.
With special caring thoughs and continued Hope,
Bonni