Ivan rocking it since 2003
Re: Ivan rocking it since 2003
Hi Ivan, Glad to hear your cryo procedure went well. I was told by my oncologist that it's pretty painful after a cryo procedure. Is that true?
Re: Ivan rocking it since 2003
No, I don't believe I've ever taken a painkiller after any cryo ablation. It's certainly unpleasant, but not painful in my experience.
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Ivan rocking it since 2003
Based on Brittany's Cryoablation experiences I agree with Ivan regarding the pain issue. Brittany experienced some post Cryo discomfort, but not severe intolerable pain, and it was certainly much less painful than surgical resection of lung mets. She did however experience severe pain following her lung met Radiofrequency ablation (RFA) in Pittsburgh, but we discovered that the post RFA pain was the result of a post RFA pneumothorax (collapsed lung) which required emergency hospitalization and insertion of a tube to reinflate the lung which thankfully ultimately resolved the pneumothorax and the pain. If Cryo is a possible option for treating your largest most concerning lung mets, I would certainly recommend that you pursue it Jen and not allow concern about possible pain prevent you from moving forward with having this procedure. With special caring thoughts, healing wishes, and continued Hope, Bonni
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MartinBube
- Member
- Posts: 185
- Joined: Fri Jan 30, 2015 11:42 am
- Location: Skopje, Macedonia
Re: Ivan rocking it since 2003
Great news Ivan. I'm very happy to read that all went well.
I wish you very fast recovery.
I wish you very fast recovery.
Re: Ivan rocking it since 2003
Well, I went to the gym today. Feeling well.
Not coughing as much as for the centrally located ablations. Not as much discomfort either.
Not coughing as much as for the centrally located ablations. Not as much discomfort either.
Re: Ivan rocking it since 2003
Well I have almost no pain breathing now and not coughing any blood up.
Got a bit of pain in the lower oblique / abdominal region. It's kind of hyper sensitive to touch and numb. Guessing the cryo probes nicked a nerve or something. It's nothing major, and I expect it to fade away pretty soon. It's not really affecting anything in a major way.
Got a bit of pain in the lower oblique / abdominal region. It's kind of hyper sensitive to touch and numb. Guessing the cryo probes nicked a nerve or something. It's nothing major, and I expect it to fade away pretty soon. It's not really affecting anything in a major way.
Re: Ivan rocking it since 2003
It is a typical side effect after percutaneous ablation of the tumors located close to the chest wall - the damage of the intercoastal nerves. Using RFA the risk of the permanent damage is very high and the procedure is very painful in this location, with cryo it is easier as the damage is usually transient and nerve recovers as the time goes. In some sense it is similar to the post-thoracotomy pain syndrome after the nerves cut or over-stretched (when the window technique is used like dr.Rolle does instead of cutting the nerves and muscles as it is usually done in US).
Olga
Re: Ivan rocking it since 2003
To update Ivan's profile up to date:
he just had 3 scans in Feb.2016 (12+ years since he was Dx in Nov.2003). He had a brain MRI (to watch for the new mets appearance once in 6 months now since he had a single 10 mm brain met surgically removed couple of years ago), an adrenal area MRI (to control the area after he had 2 cryoablation for the left side and 1 cryoablation for the right side during the last 2 years), a chest CT (to evaluate the success of the few very complicated done by Dr.Littrup and easy ones done by Dr.Liu cryoablations during the last year).
The results:
- bran MRI - clear;
- adrenal MRI - everything looks stable (did not see the report yet, I would expect the post-ablation necrotic nodules to start decreasing now);
- lung CT - it looks like the ablations were successful but 2 new small growth from what previously was though a scar tissue noted, they grew by 2 mm but to small now to take any actions (6 and 8 mm), they are going to be evaluated by Dr.Liu locally re. location, if they are easy to cryoablate or not.
Ivan feels very well, and is able to work, play all sports and ski and travel.
he just had 3 scans in Feb.2016 (12+ years since he was Dx in Nov.2003). He had a brain MRI (to watch for the new mets appearance once in 6 months now since he had a single 10 mm brain met surgically removed couple of years ago), an adrenal area MRI (to control the area after he had 2 cryoablation for the left side and 1 cryoablation for the right side during the last 2 years), a chest CT (to evaluate the success of the few very complicated done by Dr.Littrup and easy ones done by Dr.Liu cryoablations during the last year).
The results:
- bran MRI - clear;
- adrenal MRI - everything looks stable (did not see the report yet, I would expect the post-ablation necrotic nodules to start decreasing now);
- lung CT - it looks like the ablations were successful but 2 new small growth from what previously was though a scar tissue noted, they grew by 2 mm but to small now to take any actions (6 and 8 mm), they are going to be evaluated by Dr.Liu locally re. location, if they are easy to cryoablate or not.
Ivan feels very well, and is able to work, play all sports and ski and travel.
Olga
Re: Ivan rocking it since 2003
Happy to read Ivan is doing well. He's an effing warrior and, like Martin said, an inspiration. Lots of love to you guys.
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Bonni Hess
- Senior Member
- Posts: 1677
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: Ivan rocking it since 2003
Dear Olga,
Thank you for your thoughtful update on the mostly good results of Ivan's most recent scans which are certainly very encouraging given the fact that he has never had any type of systemic treatment during the past 12+ years since he was diagnosed in November 2003. It is certainly a testimonial to the critical importance and the effectiveness of being extremely pro-active, knowledgeable, and vigilant in managing this challenging disease with appropriate treatment of mets at the smallest possible size to shrink and destroy them and to help reduce tumor burden which helps strengthen the immune system to better fight the cancer. I am SO VERY grateful that there are no new brain mets especially since the nature of this insidious disease based on our personal experience with Brittany and the anecdotal experience of other ASPS patients who I have followed is that once there is brain metastasis, there are heartbreakingly usually more brain mets that eventually develop which is why we continue to schedule Brittany for brain MRI's every three months even though she has thankfully had disease stability and no new tumors for the past almost seven years since beginning her Cediranib Clinical Trial. I am sorry for the increased growth of a couple of Ivan's lung mets, but am grateful that they will be eligible for Cryoablation treatment if they continue to grow. It it remarkable that there are no other new lung mets given the nature of this disease to continue to progress, and again I think it is a testimonial to the effectiveness and success of your very pro-active approach to fighting and managing this disease. Ivan and you are truly an inspiration to our ASPS Community, and Ivan's long term survival is a source of immense Hope.
Sharing the joy of Ivan's mostly good scan results with congratulatory hugs, caring thoughts, healing wishes, much love, and continued Hope,
Bonni
Thank you for your thoughtful update on the mostly good results of Ivan's most recent scans which are certainly very encouraging given the fact that he has never had any type of systemic treatment during the past 12+ years since he was diagnosed in November 2003. It is certainly a testimonial to the critical importance and the effectiveness of being extremely pro-active, knowledgeable, and vigilant in managing this challenging disease with appropriate treatment of mets at the smallest possible size to shrink and destroy them and to help reduce tumor burden which helps strengthen the immune system to better fight the cancer. I am SO VERY grateful that there are no new brain mets especially since the nature of this insidious disease based on our personal experience with Brittany and the anecdotal experience of other ASPS patients who I have followed is that once there is brain metastasis, there are heartbreakingly usually more brain mets that eventually develop which is why we continue to schedule Brittany for brain MRI's every three months even though she has thankfully had disease stability and no new tumors for the past almost seven years since beginning her Cediranib Clinical Trial. I am sorry for the increased growth of a couple of Ivan's lung mets, but am grateful that they will be eligible for Cryoablation treatment if they continue to grow. It it remarkable that there are no other new lung mets given the nature of this disease to continue to progress, and again I think it is a testimonial to the effectiveness and success of your very pro-active approach to fighting and managing this disease. Ivan and you are truly an inspiration to our ASPS Community, and Ivan's long term survival is a source of immense Hope.
Sharing the joy of Ivan's mostly good scan results with congratulatory hugs, caring thoughts, healing wishes, much love, and continued Hope,
Bonni
Re: Ivan rocking it since 2003
Nothing to really update at this time. Feeling great, next scans for abdominal MRI / lung CT to happen around beginning of June.
My long-time oncologist (since day 1) is retiring at the end of June.
My long-time oncologist (since day 1) is retiring at the end of June.
Re: Ivan rocking it since 2003
Thank you to everyone supporting us throughout pancreatic surgery Ivan had to have in Germany. I now moved the detailed discussion to the pancreatic metastases forum:
http://www.cureasps.org/forum/viewtopic.php?f=81&t=1260
This is the summary of what happened after the scans were done in June 2016.
1. The nodule suspicious for the met was found in the left tail posterior (facing to the back) part of pancreas on June 2016 MRI. The exact location was very hard to diagnose, two additional CT scans were done but the location was inconclusive still.
2. The local top pancreatic surgeon initially agreed to resect it but then unexpectedly changed his mind after the discussion of the case on the surgical round - where the surgeons gather to discuss the unusual and complex cases. So no surgical option was avail. locally. The reason is unknown to us. He would perform the full size open surgery from the front and would have to take out all the organs first to get there as it was at the very back of the abdomen, so the surgery would have been very traumatic. We were looking for other options as they were discussing if to offer us this approach.
3. We consulted close to 10 doctors around the world - 3 cryoablation, 1 IRE ablation, few laparascopic plus few open abdominal surgeons, all are tops in their area of expertise. Few surgeons agreed that the surgery is both appropriate and feasible with saving of pancreas and spleen.
4. We choose the surgeon with the very rare sub-specialty skill set - he specializes in the laparoscopic surgery from the back mainly working with the organs easily accessible from there - adrenal, kidneys, back side of pancreas, spleen. He is known as a world class expert in adrenal preserving surgery. I found him a year ago when looking for the adrenal saving surgery in the same area, we opted for the cryoablation that time but I remembered Dr.Walz when I saw the description of the location of the suspected met in the MRI radiologists report. Dr.Walz is located in Essen, Germany where he has his own clinics of the minimally invasive surgery - the surgery is done trough 3 incisions in the patient's back and no muscles are cut. He developed most of the techniques of this surgery and teaches other surgeons from around the world how to do it. Most of the leading places had their surgeons trained by him.
5. The surgery was done on Aug. 4th, 2016. I was hopeful that we made a right choice but Dr.Martin Walz even exceeded our expectations. The case turned out to be far more complex than expected due to the excessive amounts of the abdominal adhesion as a result of the previous cryoablation in the same area, it took 1 hour to get trough that, plus hard to find the location - intro-operative ultra-sound was used. Then the spleen feeding blood vessels (artery and vein) had to be peeled off the pancreas to allow the resection of the underlying tail end and the wall of the vein was cut to create the safe margins from the tumor, and repaired (stitched) after that. Spleen was preserved, only small end piece of the pancreas tail with the met in it was resected. Ivan did not vomit after the general anesthesia which is an achievement by itself - we told them it was a problem and they made sure it did not happen.
6. The recovery was kind of unusual. Pretty rough 2 or 3 first days changed into very fast recovery - Ivan had a progress from the limited slow walking into pretty intense stairs climbing in just few days, also the amount of the pain killers he used was ridiculously low - few minimal doze oxycodone pills in the first few days, like 3 or 4 overall. Pancreatic leak ended in 7 days after the surgery and we were allowed to fly home. Now, 2 weeks after the surgery, he is living the almost normal life. Started to train at the gym (I can only hope it is very light), the pain level is minimal. He sleeps, eats and works normal. We are blown away by the quality of Dr.Walz surgery - all targets are met with the minimal pain, also no nerves are damaged and no infection either. The overall experience of the clinics is excellent - the care, the comfort, the cleanness and the food are all super good. I recommend to everyone with the tumors in the same location esp. adrenals or kidneys consult Dr.Walz before to proceeding with other options - if you can pay.
The details/contact information are posted in the pancreatic/adrenal metastases topic:
http://www.cureasps.org/forum/viewtopic.php?f=81&t=1262
Thank you everyone for the best wishes and support during the Ivan's surgery.
http://www.cureasps.org/forum/viewtopic.php?f=81&t=1260
This is the summary of what happened after the scans were done in June 2016.
1. The nodule suspicious for the met was found in the left tail posterior (facing to the back) part of pancreas on June 2016 MRI. The exact location was very hard to diagnose, two additional CT scans were done but the location was inconclusive still.
2. The local top pancreatic surgeon initially agreed to resect it but then unexpectedly changed his mind after the discussion of the case on the surgical round - where the surgeons gather to discuss the unusual and complex cases. So no surgical option was avail. locally. The reason is unknown to us. He would perform the full size open surgery from the front and would have to take out all the organs first to get there as it was at the very back of the abdomen, so the surgery would have been very traumatic. We were looking for other options as they were discussing if to offer us this approach.
3. We consulted close to 10 doctors around the world - 3 cryoablation, 1 IRE ablation, few laparascopic plus few open abdominal surgeons, all are tops in their area of expertise. Few surgeons agreed that the surgery is both appropriate and feasible with saving of pancreas and spleen.
4. We choose the surgeon with the very rare sub-specialty skill set - he specializes in the laparoscopic surgery from the back mainly working with the organs easily accessible from there - adrenal, kidneys, back side of pancreas, spleen. He is known as a world class expert in adrenal preserving surgery. I found him a year ago when looking for the adrenal saving surgery in the same area, we opted for the cryoablation that time but I remembered Dr.Walz when I saw the description of the location of the suspected met in the MRI radiologists report. Dr.Walz is located in Essen, Germany where he has his own clinics of the minimally invasive surgery - the surgery is done trough 3 incisions in the patient's back and no muscles are cut. He developed most of the techniques of this surgery and teaches other surgeons from around the world how to do it. Most of the leading places had their surgeons trained by him.
5. The surgery was done on Aug. 4th, 2016. I was hopeful that we made a right choice but Dr.Martin Walz even exceeded our expectations. The case turned out to be far more complex than expected due to the excessive amounts of the abdominal adhesion as a result of the previous cryoablation in the same area, it took 1 hour to get trough that, plus hard to find the location - intro-operative ultra-sound was used. Then the spleen feeding blood vessels (artery and vein) had to be peeled off the pancreas to allow the resection of the underlying tail end and the wall of the vein was cut to create the safe margins from the tumor, and repaired (stitched) after that. Spleen was preserved, only small end piece of the pancreas tail with the met in it was resected. Ivan did not vomit after the general anesthesia which is an achievement by itself - we told them it was a problem and they made sure it did not happen.
6. The recovery was kind of unusual. Pretty rough 2 or 3 first days changed into very fast recovery - Ivan had a progress from the limited slow walking into pretty intense stairs climbing in just few days, also the amount of the pain killers he used was ridiculously low - few minimal doze oxycodone pills in the first few days, like 3 or 4 overall. Pancreatic leak ended in 7 days after the surgery and we were allowed to fly home. Now, 2 weeks after the surgery, he is living the almost normal life. Started to train at the gym (I can only hope it is very light), the pain level is minimal. He sleeps, eats and works normal. We are blown away by the quality of Dr.Walz surgery - all targets are met with the minimal pain, also no nerves are damaged and no infection either. The overall experience of the clinics is excellent - the care, the comfort, the cleanness and the food are all super good. I recommend to everyone with the tumors in the same location esp. adrenals or kidneys consult Dr.Walz before to proceeding with other options - if you can pay.
The details/contact information are posted in the pancreatic/adrenal metastases topic:
http://www.cureasps.org/forum/viewtopic.php?f=81&t=1262
Thank you everyone for the best wishes and support during the Ivan's surgery.
Olga
Re: Ivan rocking it since 2003
Wow, that was a great summary. Dr. Walz did a fantastic job and it's amazing how well and quickly Ivan recovered. I am so happy for Ivan to be able to resume a pretty much normal life after such a major surgery and glad that the tumor is out!
Re: Ivan rocking it since 2003
Ivan had his first post-pancreatic resection MRI with the contrast of the pancr area on Nov.17, 2016. We got the copy of the scan on a CD and shared it with Dr.Walz via internet/drop-box. I just received a happy e-mail from Dr.Walz that he reviewed the scan. He said it looks perfect. The pancreas is fine and there is no postoperative problem. We are very happy with the result and with the doctor's positive and active attitude. It is also a relief that there are no new other obvious pancreatic metastases that he would notice.
Now we are waiting to hear from Dr.Littrup re. post ablation appearance of the previously cryoablated adrenal mets that I expect to be visible there and from the local radiologist re. overall scanned field - pancreas/adrenal/kidneys - if they found anything new. It was how the pancreatic met was first found, Ivan was scanned for the post-cryo of the adrenal mets and the radiologist noticed this panc met, very vaguely appearing on an background of the post cryo scar tissue.
Now we are waiting to hear from Dr.Littrup re. post ablation appearance of the previously cryoablated adrenal mets that I expect to be visible there and from the local radiologist re. overall scanned field - pancreas/adrenal/kidneys - if they found anything new. It was how the pancreatic met was first found, Ivan was scanned for the post-cryo of the adrenal mets and the radiologist noticed this panc met, very vaguely appearing on an background of the post cryo scar tissue.
Olga
Re: Ivan rocking it since 2003
Olga and Ivan and family
So glad to hear of the pancreas post op results
We will be looking forward to Dr Litrupps report.
Hope it comes soon for your peace of mind
Love
Debbie and family
So glad to hear of the pancreas post op results
We will be looking forward to Dr Litrupps report.
Hope it comes soon for your peace of mind
Love
Debbie and family
Debbie