Josh from Kansas - Dx Sep 2012

[D.ap]

Hey Josh

Let's review your history
Sept 2012 --primary removed, biopsy right lung? 3 removed needle wise ?
Jan 2013 --left lung laser treated over 70 mets treated
Aug 2013--right lung over 70 treated
June ct with contrast showed 6mm tumor on left lung
October CT w contrast showed same tumor at 15mm
From primary to first laser surgery was a little over 3 months
Olga or Ivan could this be a late rebounding of growth
The primary was a little over 6cm by 2cm?
We are also asking Dr Rolle

Thanks
Debbie

[Josh]

Just a few corrections
Sept 2012 --primary removed, biopsy right lung? 3 removed needle wise ? Was a VATS, not a needle
Jan 2013 --left lung laser treated over 70 mets treated
Aug 2013--right lung over 70 treated
June ct with contrast showed 6mm tumor on left lung
August CT was done with no contrast prior to second surgery showed this nodule at maybe 8mm
October CT w contrast showed same tumor at 15mm
The primary was a little over 6cm by 2cm? 6.8x5.5x3.6 cm via pathology report

[Ivan]

8 in August to 15 in October is fast. Is it close to the chest wall?

I would be ablating it right now probably, unless Dr. Rolle says there's sufficient other progression for round 2.

[Olga]

Josh, have you heard from Dr. Littrup about possible cryoablation yet? They are very busy there, doing lots of ablations and reviewing free of charge lots of perspective patient's scans, so when we send them a disk, I would send an e-mail to Barb in a week or two asking if they had a chance to review it. That way if they review it, she doesn't need to go look for your contact info but is able to answer your e-mail with the result of the scan review...you should also let them know about your co-existing lung condition.

[Bonni Hess]

Dear Josh,
Thank you for your thoughtful update. I am so sorry that your most recent chest CT scan shows a concerning relatively rapid increase in the size of one met in your left lung, but am grateful that you appear to have a couple of possible treatment options which you are exploring. It seems that Cryoablation with Dr. Littrup may be the best treatment option for the rapidly growing met, but I understand that Cryo probably won't be able to treat and destroy all of the remaining multiple lung mets which appear to show a smaller amount of increased growth. However, it is sometimes important to treat the most concerning met(s) first to prevent them from becoming too large to treat as we did with a couple of Brittany's largest and most concerning lung mets with the understanding from Dr. Littrup that treatment of the remaining mets would still need to be addressed with some type of systemic treatment since there were too many to successfully resect and she was not a candidate for laser resection with Dr. Rolle because she had mets in other areas of her body. I echo Olga's advice to send Dr. Littrup's office a disk of your most recent scan for his review and opinion and then be persistent in communicating with Barb regarding the results of Dr. Littrup's review and suggestions. Take care Josh and keep in touch with the Board to let us know the results of your treatment decision.
With special caring thoughts, healing wishes, and continued Hope,
Bonni

[Josh]

8 in August to 15 in October is fast. Is it close to the chest wall?

The Aug CT was done without contrast in Coswig, so I'm not sure if that affects how big the tumor appears. These are also my own measurements, so they could be incorrect. One of the two that I think he is talking about look to be close to the chest wall to me. The larger appears to be in the middle of the lobe...again all conjecture by my medically untrained eyes

We did hear back from Barb, Dr. Littrup's nurse, and Dr Littrup reviewed my scans, but replied that he didn't see the benefit of removing two nodules if the rest are also growing. He also made a comment about some on the right having grown, but the CTs I sent him were June/Aug/Oct, and the June/Aug were both prior to the laser surgery so I am confused about what he is comparing the right side to?
Anyway, I have asked for clarification from him via Barb, along with explaining a few of our ideas for how cryo would fit in to the plan, and hope to hear back from him this week. Also awaiting Dr Federman's review of the Oct scan.

I also asked about insurance coverage for cryo and Barb said sometimes it is paid by insurance. Any advice on making sure the insurance company understand the importance of the procedure and thus agree to helping to finance it would be appreciated. Feel free to PM if you prefer to discuss finances in private. From what I understand, a cryoablation usually runs in the $10-14,000 range, which is 1/2 to 3/4 the cost of a complete surgery and hospital stay in Coswig!!

Just a side note for anyone who may have consulted with Dr. Schwarz at MSKCC in NY, apparently he is leaving for another job. He did not specify what the job was.

I will update as we work through this next phase of our treatment plan; I hope to know more soon.

Take care everyone.

[Olga]

Josh, I am confused now - why would you send pre-surgery CTs to Dr.Littrup - are both of them done before of the latest surgery in Coswig? On the operated side? I am may be not reading carefully enough?
Olga.

[Josh]

Josh, I am confused now - why would you send pre-surgery CTs to Dr.Littrup - are both of them done before of the latest surgery in Coswig? On the operated side? I am may be not reading carefully enough?
Olga.

Sorry if that was unclear.

The tumors of current concern are on the left side that was operated in January. I had a CT in Coswig prior to the August surgery on the right side. Next CT was in Oct. I sent all 3 to Dr. Littrup (because Coswig was without contrast, I didn't know if he needed contrast or not). This is why I am confused as to how Dr. Littrup is seeing growth in the right side.

Hope that clarifies.

[Olga]

Probably Dr.Littrup missed the fact that the right side was just operated on using laser assisted resection, leaving lots of round shaped scars in place of the former mets that appear to be grown up mets if you do not know what was done. Clarify that to them, he knows Dr.Rolle.

[Josh]

I have received a response from Barb. Dr Littrup doesn't think it is a good idea to do cryo right now because he fears it will cause the other tumors to accelerate in growth. He has suggested seeking another laser treatment with Dr Rolle.
We are still awaiting a response from Dr Rolle.

[D.ap]

Olga

What is the maximum size that the met can be ablated?
Also I know that Dr Rolle can remove mets up to a certain size then it becomes more surgical?

Thanks
Debbie

[Bonni Hess]

Dear Josh,
I am very surprised and perplexed about Barb's response telling you " Dr Littrup doesn't think it is a good idea to do cryo right now because he fears it will cause the other tumors to accelerate in growth". Brittany underwent two Cryoablations with Dr. Littrup several years ago for a couple of her largest, most concerning, and surgically inaccessible lung mets, and Dr. Littrup never mentioned anything to us about the Cryo possibly causing accelerated growth in her remaining multiple lung mets. His only admonishment was that he could ablate a couple of the lung mets but that she would ultimtely need to find some type of systemic treatment to shrink/destroy the majority of her lung mets because there were too many to ablate. Perhaps there is some new evidence and data that Cryo accelerates the growth of other tumors, but I am not personally familiar with it. Olga, has Ivan ever been told that this is a risk of Cryo, and/or do you have any information regarding this issue? I will be anxious to hear anything that anyone might know about this since Cryo has always seemed to be a good and viable treatment option for ASPS patients with one or a couple of rapidly growing, large, concerning, and unresectable lung mets.
With great bewilderment, special caring thoughts, healing wishes, and continued Hope,
Bonni

[Olga]

Josh, do you only see a faster progression in one met? May be you should have one more scan to re-evaluate the situation. May be Dr.Littrup sees more progression. When is your next scan.

Probably Dr.Littrup has seen something in the follow up scans for his cryoablated patients that we are not aware of. I too have not seen any clear signs of the progression in proximity to ablated mets, but from the logical point of view it may happen. To heal and dissolve the ablated met, the body need to increase the processes in the area that could also cause the increase the growth in the mets in that area.
I would do 3 things at the same time:
1. Consult with Dr.Rolle if more surgery is possible so soon given the co-existing lung condition. If not, I would forward his answer to Dr.Littrup and ask to reconsider in absence of other options. Also ask Dr.Rolle if they could provide or recommed any treatment to improve the lungs condition - they have an excellent therapeutic part of their hospital that treat patients with diff. lung conditions, very rare specialized one.
2. Consul with some of the leading lung radiosurgeons like Okunieff or the one that Tom used re. possible radiosurgery. In absense of other options, it is still a very valuable option, low traumatic and the dreaded lung fibrosis is a relatively rare complication.
3. Consult with the leading RFA docs they might be able to treat the met and to get an insurance to pay for it. Dr. Dupuy is the name I know to start with.

[Bonni Hess]

Dear Josh and Olga,
As always, excellent advice based on your extensive knowledge and valuable insights Olga.
Perhaps Dr. Littrup should be directly asked if he " has seen something in the follow up scans for his cryoablated patients that we are not aware of". This would certainly be important information to have for anyone considering Cryo for their lung mets. I don't remember Brittany developing any increased lung mets following her two lung Cryoablations with Dr. Littrup, but suspiciously she did have extensive disease progression following her Radiofrequency ablation for her lung mets in Pittsburg. At the time of the lung RFA we were unaware of any other scan visible mets in her body, but following the RFA she heartbreakingly seemed to rapidly develop widely disseminated mets. Of course we can't know if this was just cooincidental with the RFA, or just the nature of this unpredictable and not always indolent disease.
With special caring thoughts and continued Hope,
Bonni

[Olga]

Josh, some add. info.
This Dr.Okunieff I was talking about http://cancer.ufl.edu/administration/ad ... nieff-m-d/
he is in Florida.
he is currently studying the side effects of the radiosurgeries and he might be able to give an estimate of the risk for you to develop the post-irradiation fibrosis. He also serves on some committee that controls the safety of the radiation treatments in US. They also had some clinical trials to protect/treat the fibrosis.
Do not be discouraged by Dr.Littrup refusal to do the cryo now. He is a very kind and knowledgeable doctor and is trying to find the best way to manage your disease without putting you at risk. If Dr.Rolle will advise not to have a surgery now but wait and in order to buy a time he'd suggest cryo - Dr.Littrup might even reconsider if he knows that surgery is not an option for awhile, but you have to consult all of them to find the best solution for now, may be even ask them to communicate directly, forwarding the Dr.Rolle's answer.
When is your next lungs CT scan if you have it scheduled.