Nhi from NY - Dx June 2016

[D.ap]

I think the anesthesia and pain control protocol with the European folks should be a consideration if the tumors will be cherry picked .
Just a thought all.
And or observation ?
Love to all

[ntran727]

You both make very good points. I was hesitant about the surgery and after thinking about it decided that if I were to do any surgery, it would probably be in Germany and that there is no rush to do it especially since I am tolerating my medication well.

Another twist now is that I have some lytic changes to my manubrium that was noted on this recent scan (first time mentioned). My oncologist sat down with the radiologist, and they looked back on previous scans and noted that it was first seen 2 scans ago, but became more prominent on the last scan and even moreso on this recent one. He wants to get it biopsied as it is worrisome for a bone met. The biopsy should be easy due to location and they are in the process of scheduling it now.

I am also scheduled for my 6 month MRI abd/pelvis at the end of February. Let’s hope there are no new mets there.

[D.ap]

Hello Nhi

The biopsie should tell the tale huh .

Was your primary considered high mitotic , high grade by your pathologist ?

Bone scanning is quite the science huh ?:/
Could it be from the sutent useage?

Let us know how turns out .
Will it be performed with a local anesthesia ?
Thinking of you
Love

[ntran727]

The tumor is high grade based on the pathology report yes.

We haven't been doing bone scans as my oncologist felt it was not necessary since we are doing CTs and MRIs frequently. I didn't want to be pushy about it, but now I will discuss with him the need for annual or at least biannual bone scans.

Biopsy will be done CT guided, not sure about anesthesia because they are working on scheduling it for me now. It's good that it's very small (he said less than 1cm) and hopefully can be ablated if it is a met. I am praying no other mets currently since I have to wait until the end of the month to get my MRI.

I will keep you all updated.

[Sarah Ti]

Hi Nhi.Just read your post today after posting the exact same issue on asps fb group.Our situation is quite similar being on targeted therapy.Yesterday,on my visit to oncologist.He said exact same thing that votrient is working and showing stability but surgery can give me a chance towards cure.Even though,Votrient might shrink completely and if i go off it still at some point the mets will re-grow as this drug doesn't really kill the mets.Also,at some point of time resistance occurs and this drug can't be taken life long.Most importantly keeping in consideration the unavailability of any immunotherapy or trails.And after surgery if mets re-grow then I can be back on votrient.It's a hard decision to make.I hope your biopsy comes out to be nothing worrying.
And lots of good wishes for the upcoming twins in May :)

[Olga]

Sarah, I do not think that Nhi oncologist suggested that in her case a surgery can give her a chance towards cure...My main question was what was his rationale that he decided to support her coming off the drug that is working to have a surgery to remove only few mets that are stable. Yes the surgery, even incomplete, can buy a time to survive long enough that the effective systemic treatment is found. But so can the TKI drug if it keeps working long enough.

[Ivan]

IMO if you're truly stable and you're tolerating OK I wouldn't have surgery at this time.

You're not going to resect all the tumors likely (since there's probably many more microscopic ones not visible) so the value added is dubious.

The inflammatory responses after surgery are scary to consider if it's actually not curative.

I'd just sit low and quiet for as long as ASPS does the same. Future cures are coming in the next few years. The ultimate cure will via through something like CRISPR not via a surgical technique. Surgery is nothing but time management. I'm not seeing any time management advantage in this case especially if they are mm in size.

I'm probably one of the most aggressive proponents of surgery out there, but in this case it seems almost reckless to try.

[ntran727]

Yes Sarah, you sound like me. I decided not to have the surgery either because it wouldn’t have made a difference. I think my oncologist was thinking the same of just resection the tumors and then take me off meds and just put me back on if they grow back.

We got side tracked anyway because of the lytic changes to my manubrium. Biopsy was done 6 days ago, I tolerated well with just light sedation but was up for it the whole time. Pain okay, well tolerable afterwards and I’ve worked 6 days in a row since then. Results show ASPS, so I’m seeing my oncologist in 2 weeks to discuss treatment changes/options. I am getting my MRI abd/pelv in 2 days and would love it if it were clear with no new mets.

How do we treat bone Mets? I looked at the scan, mine is less than 1cm, but close to that size, right on my manubrium. What do you guys think? Options? I want to research more before meeting my oncologist.

[Olga]

I am very sorry to hear the result of the biopsy. It is not unheard of when the response to treatment in general and to TKI in particular is heterogeneous. Brittany Hess had the progression in a single soft tissue met with all the rest shrinking and it was resected with the good result overall.
Re.treatment options:
- cryoablation (Dr.Littrup does bone mets, the size is good for this);
- RFA (we had cases small mets treated with the compete resolution);
- SBRT (the size is good but sine the area is close to the heart I would think twice).
The manubrium is the thickest and strongest portion of the sternum so I would expect that it could stand any local ablation but as usual you should only have it done by someone who really has the experience in this.

[Bonni Hess]

Dear Nhi, I have been away from the computer and the Discussion Board for awhile and am just now getting a chance to catch up on the posts. I am SO VERY happy and excited for the upcoming Spring birth of your surrogate borne twin babies,, but my heart is breaking for your recent diagnosis of a manubrium met. I am grateful that the met is relatively small and that there appear to be some good treatment options for it, and I am holding VERY tight to Hope that the met is just a tumor that was unresponsive to your Sunitinib treatment as can happen with ASPS and TKI treatments, rather than being indicative of disease progression due to development of resistance to the Sunitinib. I continue to be very perplexed about, and frustrated by oncologists who naiively/irresponsibly refuse/fail to schedule critically important, essential,, and appropriate regular scans for ASPS patients including every 3-6 month chest/abdominal/pelvic scans and depending on the patient's history and current status, at least a once a year brain MRI and full body bone scan. I have repeatedly urged those on this Board to be vigilant about having regular and adequate scans even if the disease appears to be stable because based on our personal experience with Brittany, her regular chest CT showed lung met stability, but the same chest CT inadvertently showed the top portion of her liver with a liver met which would have otherwise gone undiagnosesd until it became symptomatic and then most likely untreatable by RFA which was thankfully able to be successfully done only because the met was found at a small enough size. Following that experience and the realization that this unpredictable disease can appear stable in one part of the body while developing in other parts, we have pursued a very pro-active and vigilant scan schedule that includes regular and complete scans as indicated in the scan recommendations that I previously discussed. My very best wishes are with you for a prompt treatment and successful treatment outcome for your manubrium met, and for good news results of no mets from your upcoming pelvic/abdominal scans this week. Also, if they are not currently scheduled, I encourage you to schedule a brain MRI and a full body bone scan. Take care and keep in touch as you are able. With special caring thoughts, healing wishes, and continued Hope, Bonni

[Ivan]

I second sending a scan to Dr Littrup for consideration.

[ntran727]

I have been getting brain MRI annually (last in June 2018 so it is coming up soon), MRI abdomen pelvis every 6 months (we changed from CT to reduce the radiation exposure) and Chest CTs every 4 months. He didn’t think the bone scan would be necessary because we are scanning most of my body with the other scans, so I stopped asking for it, however now I will be sure to ask for the annual bone scan. We are doing a PET now also to make sure I don’t have other disease progression. Hopefully the MRI today comes out okay and the PET okay also. The manubrium met will then be more easily treated if it is the only one that is new. I do believe that it is the same case where the TKI didn’t work for that area and has kept my lung Mets stable. We also lowered the dose very far down so I wonder if that has anything to do with it. We lowered the dose 8 months ago and that’s how long the manubrium met had been growing. It was just too small for them to see and comment on until this last scan. The normal dose for sutent is 37.5mg daily and I am on 25mg alternating with 12.5mg every other day.

Do you think cryoablation is better or RFA? Dr. Littrup is in the US and it is definitely doable for me to fly there for treatment if needed if you all think cryoablation by him is better. But of course I would rather stay around New York if possible. Does anyone know another good doc who does cryoablation or RFA around New York? I think these are better choices than SBRT like Olga said.

Thank you all for your advice.

[arojussi]

Littrup is the best. I am from Finland and there is a reason why I have ablations done by him if at all possible. I prefer cryo over rfa.

[Ivan]

Now that you have more active disease I recommend every 6 months for brain MRI. A new nodule could grow to over 1 cm within a 12 month scan interval - not good.

It really depends on the wether the ablation is complex or not. You need to consult with some local doctors first. If it is indeed a complex one then seeing doctor Littrup is worth it.

[Olga]

I think there are other cryo doctors in NY, at the MSK or elsewhere. But the bone cryoablation is a rare experience for any interventional radiologist esp. close to heart. Dr. Littrup is an expert and besides we do not even know if it is feasible at all to cryoablate this met, this suggestion is just a guess. Sometimes Dr.Littrup's team is able no negotiate for the insurance coverage out of network based on the case rarity/complexity of the location. You do not need to fly to Detroit for the consultation, the CD disk and the accompanying clinical history note is sent by the corrier there for the review after it is permitted by Dr.Littrup team. I would start arranging it with the Critterton scheduling department in parallel with your local team getting the consultations locally or if you can ask them to refer you there if possible. You start from requesting the copy of the scan on a CD from the patients records.