Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I was talking to Barbara Adams who works with Dr. Littrup. She said that usually there is just an overnight hospitalization and that although it is easier for smaller lesions, they have ablated up to 6 cm tumors. She did say location is important too though - and that tumors are difficult for instance if they are right up against the windpipe etc.

I got to thinking more about RFA vs. cryoablation in the lung - I wonder if cryo could also be safer / less metastases in ASPS because it is cold and cold induces vasoconstriction. I know the probe will kill the tumor immediately, whether cold or hot, but the farther away from the probe there will be heat vs. cold radiating zones and if tumors are in the area away from the ablation, the heat not hot enough to kill could just dilate vessels and maybe that is not a good thing.

Dear 'F',
Both of Brittany's Cryoablation procedures with Dr. Littrup were done as outpatient procedures with no overnight hospitalization required, and only a few hours spent in post-op until she had recovered sufficiently from the procedure to be discharged. She was not able to fly for a week following the procedure due to the risk of pneumothorax in the event of the plane's rapid loss of altitude, but we were able to return to Seattle by train after Brittany had rested for a couple of days in Detroit.
With special caring thoughts and continued Hope,
Bonni

Bonni - where did you stay in Detroit, was it close to the hospital? Do they have some time of the patient's assisted accommodation associated with the hospital?

Hi Olga,
For Brittany's first Cryo procedure in November 2004 we stayed at the Karmanos Hospital family housing facility which is located adjacent to the hospital and a very short walk to it. The rates are very reasonable, but the rooms are very barren and we had to get two rooms because one room only accomodated two people and there were four of us with Brittany, me, my husband, and our middle son. There are shared bathroom and kitchen facilities. There are very few places to eat in the immediate area, and we were advised not to walk around the area at night because it is somewhat dangerous. When Brittany had her second Cryo procedure in January 2009, there were no rooms available at the hospital family housing, so we found a nearby bed and breakfast in a nicely renovated historial Victorian home which was about the same price as we would have had to pay for two rooms at the hospital family housing, and it included a daily gourmet breakfast. The name of the bed and breakfast is the Woodbridge Star. It is about a ten minute drive from Karmanos so you need to either have a rental car, or take a taxi, Dr. Littrup's office can help you obtain a list of housing resources, which is how we found the Woodbridge Star, or they can provide you with the contact information to make the arrangements for a room at the family housing facility. I Hope that this answers your question, but please let me know if you have any other questions that I might be able to help with. Take care.
With special caring thoughts and continued Hope,
Bonni

I'm reposting the Karmanos lodging information below.

Other general info about Cryoablation - (Barbara Adam was nice enough to answer a bunch of questions by phone):

As expected whether something can be cryoablated depends on Littrup looking at the scans. I sent them and heard back after a few days to one week. Barbara Adam thought they probably have the most extensive experience with ASPS - she thinks they have ablated about a dozen patients and one of Littrup's paper detailed an ASPS patient. "With these slow growing tumors, we pluck them all the time and see patients back when we need to."

They do not ablate if there are many tumors in one area. The rationale is that if you kill one, then when the lung recovers, the revascularization might make the other ones grow faster. They were very familiar with Rolle's surgeries and say that they will see ASPS patients over the years for repeated ablations. If an ablation is not complete, it can be ablated again. There is no fixed limited to ablation, but if there are too many tumors in one area or a tumor is right up to the bronchi, then it is not a good cryoablation target.

Cryoablation allows docs to visualize the full extent of the ice ball. With RFA, you cannot visualize the 'zone'. In the papers I read, it looked as if they aim for 1 cm beyond the tumor.

She said in general they prefer their patients are in clinical trials because they can only do a few tumors at a time with cryoablation.

She said she doesn't know of any problem with conventional insurance covering the cryoablation, but usually they need pre-authorization. For cryoablation in the lung, they usually use a 'generic' tissue guided ablation code.

Minimum size she said is 0.7 to 1 cm. And they have successfully ablated up to 6 cm, but as mentioned, location and other factors determine whether a patient is a good candidate.

She said cryoablation can usually be arranged in 1-2 weeks...but for instance Littrup is traveling a few weeks in July and August this summer.

I reached Barbara Adam through the general Karmanos number they connected me (1-800-527-6266)

Home: About Karmanos: Lodging and Local Interest

Lodging
Patients visiting Detroit to be seen or treated at Karmanos and their family members may
consider the following accommodations

Holiday Inn Express Downtown
1020 Washington Blvd.
Detroit, MI 48226
(313) 887-7000
Free shuttle service to and from Karmanos - and special rates apply when you mention you're a
Karmanos patient or family member.

Atheneum Suite Hotel
1000 Brush Ave.
Detroit, MI 48226
(313) 962-2323
Free shuttle service to and from Karmanos - and special rates apply when you mention you're a
Karmanos patient or family member.

The Inn on Ferry Street
84 East Ferry Street
Detroit, MI 48202
(313) 871-6000
Free shuttle service to and from Karmanos - and special rates apply when you mention you're a
Karmanos patient or family member.

Detroit Marriott at the Renaissance Center
100 Renaissance Center
Detroit, MI 48243
(313) 568-8000

The Detroit Medical Center’s International Center/Guest Housing
3737 Beaubien
Detroit, MI 48201
(313) 745-8761

Bonni - how often did you have to go to see Dr.Littrup after the ablation, did they give you an appt. to check on Brittany, did you have any scans there after the ablation?

Hi Olga,
Brittany's right lung Cryoblation was done last year on February 24th, and then her left one was done on March 4th, at which time Dr. Littrup also went back into the right lung to re-treat one of the tumors because the CT scan showed some of the treated tumor still remaining. CT scans were done prior to and following each Cryo procedure on the day of the Cryo. The week in between the procedures was needed for Brittany's recovery from the first procedure, but no appointment was scheduled with Dr. Littrup during that period, and he did not need to see her unless she developed post-op problems or concerning symptoms such as increased pain and shortness of breath. Following the second Cryo, Brittany was very short of breath so a chest x-ray was taken at Karmanos two days after the Cryo on March 6th, but no pneumothorax was seen. Brittany continued her recovery in Detroit for a few more days, and then she had another chest x-ray and appointment with Dr. Littrup to make sure that there was no pneumothorax before he authorized her to return to Seattle, which we did by train since she could not fly for a two week time period post-Cryo due to the risk of pneumothorax. No further follow-up was required by Dr. Littrup once we returned home and resumed her regular schedule of chest CT scans with her local oncologist. I Hope that this helps answer your questions.
With special caring thoughts and continued Hope,
Bonni

Bonni, thanks for the details. How big was the met that needed to be retreated? I think that the shortness of breath was caused by two big swollen necrotic masses in both lungs in the same time, they take a space before they start to shrink down.

Hello again Olga,
In reviewing Jim's notes from the Cryo, I can't find the information about the size of the re-treated met, but I think that one of her two large treated mets in the right lung was just under 3 cm., the other one was just under 2 cm. and the large treated one in the left lung was a little over 3 and a half cm. However, one of the mets in the right lung was so deep that Dr. Littrup had to move Brittany's heart in order to Cryo the tumor! I agree with you about the cause of Brittany's post-Cryo shortness of breath with her having undergone Cryo in both lungs within a one week time period, and not enough time for the necrosis related swelling to resolve adequately before the second procedure was done Ideally we would have liked to wait longer and return in a month or two to have the second lung treated, but time was critical in having the largest most concerning mets treated as soon as possible, so we and Dr. Littrup decided to proceed with treating both of the lungs during the same trip.
With best wishes for Ivan's successful Cryo treatment, special caring thoughts, and continued Hope,
Bonni