Ivan rocking it since 2003

[Olga]

He everyone, I hope that you had a good holiday break from this damn disease with the friends and family or a pet or a book or just nature.
I wanted to give you an update and to discuss an issues of post ablation imaging.
Ivan had 2 MRI scans both with the contrast - a brain MRI (as a part of the periodic about once in 6 month surveillance to watch after he has a single 1 cm met surgically removed by Dr.Toyota here in Vancouver about 1.5 years ago) and an abdominal/adrenal MRI to check if the recent Sept.2014 cryoablation was successful in destroying the satellite recurrence that appeared a year after the initial adrenal ablation in a narrow space between the adrenal gland and vena cava, physically touching and partially encircling it.

The brain scan result is all good, nothing suspicious is found. A big relief.

The adrenal MRI result was super confusing for everyone incl. the reading radiologist himself.
It took about two weeks to get any report from the local radiologist.
This time a cryoablation was a very complex procedure involving intentionally introducing some saline liquid into the peritoneal space to move the kidney to save it from damage, ablating the recurrence and freezing out all the interspace between these object as the possible area with the satellite sarcoma deposits. The ablation zone went deep into the wall of the vena cava, they used multiple probes that created some damage themselves. Plus there are 2 previously ablated metastases that continue decreasing and form scarves. We provided the final report from the ablation procedure to the oncologist to be shared with the team incl. a radiologist but he probably did not have a time to read it carefully to figure out what was done. His description of the image is very confusing. He saw a contrast enhancement in the liver, but with the character that is different from the one that was on the previous MRI image when a satellite recurrence was found, so he was not sure what it is but since the bright zone was in the continuity with the ablated zone, he decided it is most probably diffuse spread into the liver and wrote all of this in the report. It is hard to read a report like that - lots of warning signs that could be very scary but we have to understand that a post cryoablation (or any other ablation or a laser assisted surgery or other technically advanced treatment) images are very rare for them to see locally. And the published literature is very scarce to guide them as what means what. So we had to wait for the long 10 days for Dr.Littrup's team to read it - they were super busy plus the holidays breaks. Finally we got an e-mail from Barb that the post-ablation picture looks good and that the concerning hepatic zone is an area damaged by the freezing cold during the procedure, and now is healing. So overall, they think that there is no viable visible tumor as of now in that area, no recurrence, no spread. We are going to rescan the area to make sure it stays that way.
The other news is that Dr.Littrup is leaving Detroit Medical center/Karmanos cancer treatment institute and moving to Rhode Island Hospital/Brown University in Providence to join Dr. Damian E. Dupuy who is the biggest RFA expert in US and probably overall. They are a part of the Lifespan corp. This news feels kind of negative for us at the moment as I expect that Dr.Littrup might be more busy ther and the prices there are almost double from Detriot. We will contact Dr.Littrup soon to get some info we can share here. Probably a positive development for the people from Boston area. There is another Dr. that is taking Dr.Littrup's place at the DMC, Dr.Littrup was his mentor for the last 6 years.

[D.ap]

Ivan, Olga and family

I bet if you had been holding your breath till the final verdict you would of been passed out by then
Thank you for sharing this incredibly important lesson on letting the professional who should know make the final
call before jumping through the next proverbial ASPS hoop to treat.
Unfortunately the images are only as useful as the people who are able to professional read them and who can professionally know of the patience history.

I am just sorry it was such a looong wait for all of you.
However, it great news. Yeaaa!!

Love
Debbie

[Bonni Hess]

Healthy and Happy New Year to you, Ivan, and your family dear Olga Thank you for the very thoughtful update with the VERY good, relieving, and welcome news about the good and encouraging results of Ivan's most recent brain and abdominal adrenal gland MRI scans which is such a wonderful and positive way to begin the New Year I share your great relief and happiness with greatest joy and strengthened Hope and am Hoping that this year will bring only good news of sustained disease stability and complete and permanent healing for Ivan, Brittany, and everyone in our ASPS Community. With happy hugs, healing wishes for Ivan, warm friendship, love, and continued Hope, Bonni

[MartinBube]

Hi Ivan,

Just read your complete story here and honestly I'm admired. You are the bravest and most courageous man that I know off until this day. I wish I was more like you
it maybe comes with time until you get over the first wave of stress.

Wish all the best to you and your family and finally some rest from this asps for all of you

[Ivan]

I had a new tumor below the left adrenal gland (1.5 cm by the time it was treated). It was successfully ablated by Dr. Littrup 3 days ago. I'm now back home, recovering. Feeling reasonably well in general. The healthy tissue was no damaged, so fortunately I still have a working adrenal gland.

I also have two centrally located lung mets in the R lung which have been growing for a number of years slowly and are currently 1.2 cm or so. They will be gotten rid of by Dr. Littrup in around 2 weeks. That should hopefully round up this round of treatment.

I'm having a brain MRI this week as well.

[Bonni Hess]

Dear Ivan, Thank you for your thoughtful update. I am so sorry for the diagnosis of another adrenal area met, but I am very grateful that the met was able to be successfully Cryoablated by Dr. Littrup and that you are now safely Home recovering well from the ablation. Was the adrenal area met symptomatic or was it found in a routinely scheduled abdominal CT scan or MRI? My most positive thoughts and very best wishes will be with you for good results from your brain MRI this week, and for a successful lung mets ablation in two weeks. You and your dear mother continue to be a source of great inspiration for those of us in this ASPS Community as you continue to very pro-actively and successfully fight this insidious disease with vigilant scans and effective treatments to destroy concerning mets. Take care Ivan and have a good and speedy post ablation recovery. With gentle hugs, special caring thoughts, healing wishes, love, and continued Hope, Bonni

[D.ap]

Hello Ivan

I hope today and the following brings you strength, joy as well as good news with the brain scan.
How often will you be having scans of the adrenal area to keep tabs on it's progress?

Thank you so much for the update.

Love from all our family to yours

Debbie

[Olga]

This new left adrenal area met was not symptomatic, it was found in a routinely scheduled adrenal MRI that Ivan is having now every 3-4 months to watch over the previously cryoablated twice right side for the possible signs of the local recurrence. Thanks to the radiologist the new left adrenal met was noted - in retrospective they see the signs of it on the previous scan too. Both abdominal CT scan with the contrast or abdominal MRI are good for the post-ablation surveillance or for the check up. We switched to an MRI to reduce a radiation exposure for Ivan but in the recent discussion with Dr.Littrup it became clear that simply increasing the field of the chest CT with the contrast Ivan is having anyways for the lung mets would do the job also and have a benefit of reducing use of the contrast - now Ivan has to have a contrast for the abdominal MRI and for the chest CT separately, but it comes at expense of increasing the radiation exposure as the field increases, so it is hard to say what is more beneficial. For now he will be still having adrenal MRI with the contrast to provide better comparability with the previous scans.
It was a very stressful event for us - to find out that Ivan's solitary remaining adrenal gland is also affected by the met. There is still some slight chance that there is some piece of the right adrenal left viable between the previous cryo ablation scars but it is nearly impossible to say. If the person left without any adrenal gland it affects his life greatly. Locally we were offered few treatment options that all would completely destroy or resect the remaining adrenal gland - cryoablation, radiosurgery or open abdominal surgery. Luckily for us Dr.Littrup was very optimistic that he technically able to cryoablate the part of the gland and to save the most of it - with his skills he is able to do that on the organ that is merely 20 grams in weight, if the location allows. I also found an excellent specialized surgeon in Germany Dr.Walz who was also willing to laparoscopically trough the spine perform the VATS surgery with the partial resection of the part of the adrenal gland - he performed lots of this surgeries like 700 with preserving the adrenal. So we had to struggle for awhile between them and had numerous consultations here incl. an excellent endocrinologist that is now a part of Ivan's treatment team. Cryoablation of the solitary adrenal gland is a dangerous thing as it leaves the person without the cortisol in an hour and there is also a spike in a blood pressure during the procedure when it is affected - the outside core of the adrenal gland is producing cortisol which is one of the life sustaining hormones in our body. Having the procedure like that at the hospital outside of your insured treatment chain is very financially risky, not to say of how expensive the new place of Dr.Littrup's work is - Rhode Island Hospital. But we were lucky this time and no complications happened during the ablation, cortisol level was checked 1 and 6 hours post ablation and the next morning and it was good, also no hospitalization was needed and we slept at the hotel. I will post the detailed review the details of the having cryo with Dr.Littrup at the Rhode Island Hospital later in the cryoablation forum.
The ablation was done on Thursday and we flew back on Saturday - it was hard for Ivan but he was determined to get home as soon as possible so if anything happens, he can be treated here. Now he is going to be watched for the cortisol level next week fingers crossing but so far we see no signs of the adrenal insufficiency - from what we read, the signs are pretty severe to hard to miss.
On a side note one of the local drs we had the consultation with was even suggesting that we would leave this met untreated to preserve Ivan's quality of life - like have few years of the good quality of life with the slowly growing adrenal met. It blows our mind how different drs opinions are - from doing nothing (watchful waiting, I hate it) to huge abdominal surgery with two outside opinions - Dr.Walz from Germany and Dr.Littrup from Providence - being very optimistic that they remove it with minimal morbidity and high probability of preserving the adrenal.
We choose Dr.Littrup probably just because he has an excellent track record with us and we trust him, but both options were excellent and far superior to what was offered locally which is not unusual. Adrenal metastases treatment and partial adrenalectomy is a very undeveloped area of treatment. Till recently all the adrenal met cases would end by completely removal of the adrenal met or chemotherapy. Adrenal preservation treatment was developed in only highly specialized places as it take a very specific skills of the surgeon, they need to go learn from someone like Pf.Walz - if there is someone like him at all. Or the interventional radiologist has to be very experienced like Dr. Littrup to even contemplate the idea of cryoablation of the adrenal with its preservation. There is very low probability that one of the drs like that happen to live in your area.

[Bonni Hess]

Dear Olga,
Thank you for the additional and very detailed update on Ivan's left adrenal gland met Cryoablation. I am so very sorry for all of the stress, worry, and anguish that this challenging situation presented for Ivan and you, but am so grateful that you were able to seek several medical opinions (which we both know is always advisable and critically important to the outcome), to explore all options, and to ultimately move forward with the minimally invasive adrenal gland saving Cryoablation with Dr. Littrup. This experience clearly illustrates the importance of being very pro-active, seeking second opinions, and vigilantly having regular and appropriate scans rather than waiting for mets to become symptomatic.
I Hope that Ivan continues to recover well with stable and adequate cortisol levels and no signs of adrenal insufficiency. I Hope too that he will receive very good news of stable disease and no new brain mets from his this week's brain MRI and I will be anxiously awaiting your update on the results when your time and the situation allow.
Take care dear Olga, have some well deserved rest and relaxation, and know that Ivan, you, and your family are being held very close in my heart and most caring thoughts.
With special hugs, deepest caring, healing wishes for Ivan, positive thoughts for the brain MRI, much love, and continued Hope,
Bonni

[Ivan]

Bonni, speaking for myself this was mildly stressful just due to the fact that the process of deciding what to do here and scheduling the ablation (availability wasn't there) took way longer than expected. One doctor or the other (or the RN) kept taking a week off to go on vacation without previous notice which didn't help things.

Fortunately, Dr. Littrup is #1 and the best. I'm glad we aren't limited to local treatment options, which would have maimed or killed me a long time ago by now.

[Ivan]

I'm home after a 1.2 and 1.3 cm right lung nodules have been ablated. Ablation was very well tolerated. On day 3 I already felt the inclination to run up stairs and maybe walked around 4 miles outside at near normal pace.

However, I must have gotten some nasal infection at the hospital which manifested itself after I returned home. 4 days of 102F fever which I've probably never had in my life prior. There is no doubt in my mind that the infection was harder to overcome than the ablation. I still do not feel well, and I know it has nothing to do with the procedure itself.

[D.ap]

Ivan

Glad to hear of your ablations.
Sorry to hear of your sinus infection /virus?
Don't ignore that either as sinus can lead to brain infections.
How is the adrenal gland functioning ?
I've read sometimes sinus infection result as of low function ?

http://www.diagnose-me.com/symptoms-of/ ... iency.html

Thanks for checking in
Hope you feel better soon


Love
Debbie and family

[Bonni Hess]

Dear Ivan, Thank you for your thoughtful update with the shared good news of the successful cryoablation of your two largest lung mets and your speedy recovery from the ablation procedure. I am sorry that you developed an apparently unrelated to the ablation sinus infection and fever and Hope that the infection is resolving and you are now feeling much better. I Hope too that you received good news of no new mets from your recent brain MRI and I will be anxiously awaiting your update on the scan results when you feel better and your time allows. In the meantime I Hope that you are resting, relaxing, enjoying the beautiful Pacific Northwest summer weather and sunshine, and giving your body time to recover and heal.from your recent adrenal gland and lung met ablations. Take care Ivan. With gentle hugs, special caring thoughts, healing wishes, love, and continued Hope, Bonni

[Ivan]

I'm feeling better, but still not amazing. It's a testament to how minimally invasive ablations are that a simple infection is clearly more disruptive, and harder to recover from.

These nodules I had done in my lung were the most centrally located I ever had ablated. It's kind of interesting as to how differently they manifest in recovery. The pain was minimal, since there are no nerve endings there. The coughing, though, is quite annoying. I'm still coughing out bits of blood that looks like dark chocolate at this point. Whatever they were next to seems to have irritated me into coughing more, although it's subsiding now.

[D.ap]

Hi Ivan
Glad to hear of your feeling of getting better

The ablations were performed on the right lung and what were the typical release instructions as far as what to expect in your recovery?


How'd you feel with the anesthesia this go around?
Was the infection as a result of a virus or elsewise?


Love
Debbie