Elisa on Pazopanib

[Johannes]

Dear all,

Time for an update from Elisa! We’ll be posting here from now, since she started Pazopanib around six weeks ago. So far, no major side effects; mostly some diarrhea and fatigue, but nothing compared to Cediranib. What is weird and not pleasant at all is that her hair color is changing. It started with her eyebrows and eyelashes slowly turning white, and now all her hair at the top (close to her skin) is white. We had read that this is one of the expected side effects of Pazopanib, which most frequently occurs after one or two months treatment.

CT scans were done after only one or two weeks of treatment and didn’t show any changes compared to when she stopped Cediranib. The biggest nodule in the left lower lobe is still about 3cm in diameter, and her oncologist starts to worry about this one. He sent Elisa to a radio-oncologist who suggested stereotactic surgery (he told us it’s not cyberknife but very similar) to remove this nodule and also the biggest one in the right lung (about 1,7cm). Because of the size and the location (fairly close to the aorta) of the bigger one, he would recommend removing it as soon as possible. If ever it grows, especially in the direction towards the aorta, stereotactic surgery would not be possible any more: they usually do this type of surgery for nodules between 1 and 3cm. Side effects are apparently almost none existent.

We were a little bit surprised that this kind of local control is suddenly on the table. We know of this nodule since Elisa was diagnosed more than three years ago. It was 3cm at the time and stable for several months. Then it shrunk on Cediranib and slowly went back to 3cm. Anyway, we are still thinking about a more radical local treatment. The radio-oncologist could of course not say much about surgical options (including laser) and sends Elisa to see a thoracic surgeon to explore the options we would have here.

It was great to have Dr. Rolle’s opinion – I think we haven’t told you about this. After having looked at the images, he called us in early January and explained that the left lower lobe would have to be removed altogether (too many nodules). For the rest, he could do a laser OP. He would still recommend removing the primary and then operating the two lungs.

We are still hesitant to go ahead with these surgeries. One of the concerns is that too much of the muscle in her thigh would have to be removed, which would most likely have negative effects on her quality of life. Overall she is doing really fine these days; we are going cross-country skiing and do other sports, and we think this kind of healthy life style also helps her fight the disease. Not sure what this would look like with sort of half of her thigh removed…

Take care everyone,
Johannes

[Olga]

Johannes, thank you very much for sharing Elisa' initial experience with Pazopanib. Please keep us posted as it is a very important and unique information re. this drug in ASPS. I had a friend having the same white hair phenomenon on the earlier generation TKI - sorafenib, and she was haveing a very good response to it for a long time.
If that nodule shrunk on Cediranib, chances are it may do the same on Pazopanib and the size may get better for the radiosurgery or cryo. Have you evaluated the cryoablation option instead of the radiosurgery, it has less toxicity and side effects and it could be done close to aorta unlike the RFA without damaging it. I would get an evaluation from Dr.Littrup just in case.
The primary surgery situation is a very tough one and I totally understand your hesitation to sacrifice the quality of life. Try to use the time to get more surgical opinions and what (if anything) could be done to try to preshrink the tumor to downside it to less the burden of the surgery. I would contact the places that use isolated limb infusion and ask them if they had any ASPS patient's and what was the result, they could be found on the Pubmed. For example this one:
The use of isolated limb infusion in limb threatening extremity sarcomas.
http://www.ncbi.nlm.nih.gov/pubmed/23205633
please continue to update us on Pazopanib experience.

[Bonni Hess]

Dear Johannes,
Thank you so much for your thoughtful update on Elisa's Pazopanib experience thus far. Hopefully other Pazopanib ASPS patients or their family members will also contribute to this topic and share their Pazopanib experiences and results so that we can all learn more about this promising new drug.
The hair whitening side effect of the Pazopanib seems to be common with some of the other TKI "nib" drugs also, but strangely not with Cediranib. As far as I know, it is thankfully a temporary side effect which resolves once the drug is discontinued, and it can be resolved during treatment with hair dye (except for the eyelashes and eyebrows for which she can use mascara and eyebrow pencil) if it is an upsetting issue for Elisa.
I am so grateful that Elisa's post Cediranib scans did not show any rebound and disease progression from her having discontinued the Cediranib. I am grateful too that she is tolerating the Pazopanib well thus far with no major side effects, and that she is remaining physically active with various sports which is wonderful for her state of mind, and I agree is very important to helping her fight the disease.
Hopefully the Pazopanib will be successful in shrinking Elisa's primary and her lung mets, but I share her oncologist's concern about her largest and dangerously located lung met, and would, like Olga, recommend that you at least explore the possibility of Cryoablation of this large met with Dr. Littrup as soon as possible. Also, as I have discussed with you several times before, as Dr. Rolle has now also recommended, and based on all of the currrently available data and other ASPS patient's anecdotal experiences, I continue to think that it is very important that Elisa's primary tumor be resected at some point to try to reduce the tumor burden and better enable the Pazopanib to work. I, like Olga, recognize that resecting the primary is a difficult situation and I understand the great concern that you and Elisa have and the dilemma that you face regarding the potential impact on Elisa's currently active Lifestyle and quality of Life. I am very Hopeful that the Pazopanib will provide enough shrinkage of the primary to make resection easier, require less removal of her thigh muscle, and be less debilitating than you are anticipating that it will be if surgery was done now with the current size of the primary. When Brittany had her primary tumor removed immediately following her ASPS diagnosis in 2001, the surgeon removed 3/4 of her thigh muscle to ensure good margins. We had been told that she might then need crutches or a walker for the rest of her Life, but the day that we brought her Home from the hospital post-op she independently and triumphantly climbed the stairs to her room, and we returned the crutches and the walker to the hospital the next day ! The physical therapist at the hospital told her that she didn't need him when Brittany surpassed all of his expectations. She, like Elisa, had a very active Lifestyle prior to her surgery since she had been a cheerleader, a gymnast, and a soccer player, and thankfully she was able to continue her active Lifestyle after her surgery despite the loss of so much of her thigh muscle, a result that we attribute to her having been in such good physical shape from all of her activities. I understand and know that each situation and each patient is different based on the size and location of the tumor, but I share this with you to give you encouragement and Hope that Elisa might be able to resume her activities and sports and maintain her active quality of Life after surgery if she decides to proceed with it.
Please give her special hugs from me and know that as always, my most caring thoughts and very best wishes are with Elisa and you. I will be anxiously awaiting your next update.
With great appreciation for your thoughtful sharing, and with deepest caring, healing wishes for Elisa, and continued Hope,
Bonni

[Johannes]

Dear Olga and Bonni,

Thank you for your kind replies and your suggestions, which are as usual very helpful.

We contacted two doctors (one from the Moffitt Cancer Center in Florida and one who studied Isolated Limb Infusion in Sydney, Australia) who have recently published on Isolated Limb Infusion in sarcomas. They underlined that research on ILI is still at a fairly early stage; neither of them has any experience in treating ASPS or knows of attempts to use ILI in ASPS. One of them told us that the general resistance of ASPS to traditional chemo would not necessarily speak against ILI; but for more precise advice, we should come down to Florida.

Thanks, Bonni, for reminding us about Brittany’s surprisingly rapid recovery after the removal of her primary; I agree that an active lifestyle should always help.

Regarding the lung mets, we had a very disappointing appointment with a thoracic surgeon this week. We just wanted to explore the options available in Montreal and of course also hear his opinion on other techniques. Unfortunately, he wasn’t aware of the newer techniques, including Rolle’s laser-assisted surgery. When we gave him one of Rolle’s articles to read, he looked at it for a few seconds and then explained us why this couldn’t work or why this wouldn’t make much of a difference compared to a conventional surgery.

The possibility of cryoablation of lung mets also appeared new to him (he did mention RFA though). In the end, we just left him a few articles (written by Rolle, Littrup, etc.) that we had printed out…

To be fair, he took a lot of time to go through the CT images with us. He wasn’t too concerned by the biggest lesion in the lower left lobe (around 3cm), which he thinks could be treated (I think he meant surgically or with RFA) even if it grew a bit. But he spotted something abnormal very close to the spine. If it’s a met, it could become very problematic. Since this lesion has never been mentioned to us before, this is certainly something we will seek more information about at Elisa’s next appointments.

We might try to see another thoracic surgeon soon, just to confirm what would be feasible in Montreal, besides a conventional surgery or RFA.

Thanks again and best wishes to you,
Johannes

[Bonni Hess]

Dear Johannes,
Thank you for the updated information. It sounds like you have been very busy exploring possible treatment options for Elisa's primary and her most concerning lung mets. I'm sorry that your appointment with the thoracic surgeon was so disappointing and unproductive. I encourage you to seek a second opinion from another thoracic oncologist who is more knowledgeable about up-to-date treatment techniques. I question/challenge his lack of much concern about the 3 cm. lung met and his opinion that it could be successfully treated even if it grows a bit since Dr. Littrup told us that 3 cm. is considered the maximum size a met can be to have the best chance for a successful response to Cryo.
I personally think that you should explore/pursue either Cryoablation with Dr. Littrup or laser resection with Dr. Rolle as opposed to RFA which we suspect (but cannot definitively prove) was probably responsible for seeding and spreading Brittany's lung mets through the needle track of the heated RFA probe.
Also, I urge you to immediately schedule another scan and further diagnostic evaluation of the undetermined lesion very close to Elisa's spine. If it is an ASPS met, which I suspect that it heartbreakingly may be given the nature of ASPS to metastasize to the spine and our experience with Brittany's large spinal met, it needs to be addressed as soon as possible rather than waiting for Elisa's next appointments. Had Brittany's spinal area met been noted by the radiologist and interim oncologist and treated when it was first visible six months prior to it becoming symptomatic, it would not have invaded her spine, put her at risk of paralysis, and required two major Life threatening and very debilitating surgeries to resect it. Even though the lesion was clearly visible on the previous chest CT scans when we reviewed them after Brittany developed back pain and had a specific spinal scan, the radiologist inexcusably justified missing it/not making note of it in the radiologist report since "the scans were chest CT's rather than spinal CT's and he was not asked to look for mets other than in the chest"!!..... I strongly feel that addressing the suspected lesion near Elisa's spine needs to be your highest priority right now to prevent the lesion, if it is an ASPS met, from growing any larger.
In the meantime, I Hope that Elisa is continuing to tolerate the Pazopanib well, and that it is working to stabilize the progression of her disease and to shrink her primary tumor and her lung mets.
Please give her and yourself special hugs from me, and keep the Board updated as you are able.
With shared concern, deepest caring, healing wishes for Elisa, and continued Hope,
Bonni

[Olga]

Johannes, thank you for the update.
It is very typical and not a surprise that Dr.Rolle's laser assisted technique is not very well known in North Am. because it is not used here - if it was, none of us would need to travel to Germany to have their multiple mets resected. Cryoablation on the other hand is very well known here but just not as widely available as RFA as it takes to have this specific cryo unit plus some specific skills doctor. We have pretty skilled doc here (Dr.Dave Liu and being Canadian you would be able to get a referral to be treated by him free of charge if the local docs would be willing to sign under the statement that cryo is beneficial versus RFA in Elisa's case - if it is close to periphery nerves or other structures that can get damaged by the heat, cold is easier for it) but we still prefer to travel to see Dr.Littrup at times when the location is difficult to get the best chance to kill it, or sometimes Dr.Liu refuses to treat some met when he feels he is not confident enough to do it 100%.
I have some comments re. CT scan discussion:
- the biggest lesion in the lower left lobe (around 3cm) is at its max size for the RFA or cryo ablation to be complete. It is still might be OK but I would not wait a single minute to proceed with the consultations. Start from obtaining the copy of the CT scan on a CD.
- the lesion very close to Elisa's spine might be also possible to treat by the cryo as it allows to treat mets closer to the spine than RFA. I 100% support Bonni that you should be very fast in evaluating all the options. It is unclear to me from your post if this lesion is located in the lung tissue/pleura or in the soft tissue of the spine? The lesions in the soft tissue might be additionally evaluated by the MRI but in the lung tissue not and only comparing scans with the sufficient time in between them (like a year instead of the next ones) the docs can evaluate that. Was the CT scan done with the contrast or without?

[Johannes]

Hello and thanks again for your replies.

I totally agree with you that the 3cm lesion is certainly a major concern.

As for what is perhaps a lesion close to the spine that the thoracic surgeon spotted, I can only tell you that we will ask more specific questions about this at Elisa’s next appointments. Perhaps this corresponds to what was identified in some reports (but not all) as an anterior mediastinal lesion or a posterior mediastinal lesion?

Yesterday, we finally received a very detailed report from the CT scan of the chest (with contrast) done in Montreal in January, about 10 days after Elisa started Pazopanib. It says that most nodules are stable compared to the scans done in July and September. As we knew already, the biggest lesion in the left lower lobe is noted to have grown from 2.5 cm to 3cm (to be precise, from 2.5 x 1.9 to 3 x 2 x 2.7cm). The (stable) anterior mediastinal lesion (about 1.5cm) is noted as possibly corresponding to the thymus, and the posterior mediastinal lesion (about 1.6cm) is also noted as being stable when compared to the two studies done in 2012 but slightly bigger when compared to a study done in February 2010 (before Elisa started Cediranib). I know that every radiologist reads the images differently, but I am still a little bit confused. I went back to this February 2010 report, which noted a posterior mediastinal lesion measuring 1.6 x 2cm. This doesn’t sound smaller to me…

Take care,
Philipp

[wangcns]

Thank you very much for your updates Johannes. Kevin is going to start Pazopanib soon and we will be posting his experience with the drug here as well, so hopefully we can cross-compare. Best wishes to you and Elise...

[Bonni Hess]

Dear Johannes,
I Hope that this finds Elisa and you doing well, and Elisa having a very postive and successful response to her Pazopanib treatment. It has been two and a half months since your last update, and I am anxious to find out the results of your discussion with the oncologist about the possible lesion near Elisa's spine as well as the concerning 3 centimeter lung met, and if any treatment decisions have been made/pursued by now. I know that you are very busy, but I would deeply appreciate just a brief update when your time and the situation allow as I become increasingly concerned when people are out of touch for too long and I care so deeply about all of our ASPS Community members. In the meantime, please know that I am holding Elisa and you very close in my heart and my most caring thoughts, and that I am sending my most positive thoughts and very best wishes your way.
With deepest caring, healing wishes for Elisa, and continued Hope,
Bonni

[Johannes]

Dear all,

Elisa has been doing quite good since my last post. According to the chest CT that was done a few weeks ago all the lung mets are stable or slightly smaller; only 1 or 2mm each, but one decreased apparently from 1.8 x 1 cm to 1.4 x 1cm! This means that Elisa will continue with Pazopanib for now and that we haven’t planned any surgical interventions. The next chest CT is scheduled only for mid-August. That’s of course quite a long interval, nearly four months, and we are trying to get an appointment sooner than that.

The MRI of the thigh in March was compared to another MRI that was done more than a year ago, while Elisa was still on Cediranib. So it was not a surprise that this report noted some increase in size. One interesting detail: the report notes a "linear tract extending to the skin of the right lateral thigh, possibly the tract of a previous biopsy.” The surgeon who we saw around that time and who looked with us at the images also showed us what looks like the site of a biopsy. But Elisa never had a biopsy in the thigh! We suspect that this is the area where she hit herself with a car door back in 2009, which caused an important swelling, lots of pain and probably let the tumor grow. What I find important is that the tumor apparently takes advantage of such incisions to extend to the skin. Since a needle biopsy can cause this as well, we were happy that we had not agreed to the biopsies that Elisa was supposed to undergo at the beginning and at the end of her participation in the Cediranib trial at the NIH. The oncologists there had told us that such simple biopsies would do no harm at all…

Side effects on Pazopanib are changing a lot. More diarrhea these days, also more fatigue (perhaps related to the former!?), and her hair has turned really white at the root. We are still looking for a good and natural alternative to the chemical hair coloring products available in most drug stores and used by hairdressers. But overall, the 800mg Pazo are much easier to put up with than the 30mg Cediranib.

A friend of mine, who is a fellow in oncology and attended the ASCO in Chicago, sent me a report about an interesting response to Pazopanib + mTOR-inhibitor in (another) soft tissue sarcoma. Here it is (I will also post this in the section on medical publications):

Reversal of acquired resistance to pazopanib in soft tissue sarcoma with addition of an mTOR inhibitor: A case report.
Background: Pazopanib (P) is a multikinase inhibitor targeting the VEGF and PDGF receptors capable of controlling soft tissue sarcoma for several months. Acquired resistance to P usually leads to chemotherapy resumption. We present a case of reversal of acquired resistance to P by addition of an mTOR inhibitor. Methods: A 46 year old female, completed five cycles of adjuvant treatment with epirubicin and ifosfamide followed by radiotherapy for a fully resected gluteal pleomorphic undifferentiated sarcoma. Ten months later, a single lung metastasis was resected, followed by trabectedin, then switched to gemcitabine and docetaxel after five cycles due to progression. Seven cycles were given with stable disease as best response. Upon progression, P 800mg/d was initiated as part of a compassionate program and continued for six months with a partial response. When disease progressed, treatment was switched to doxorubicin, dacarbazine and cyclophosphamide with rapid progression after two cycles, both complicated by febrile neutropenia. Uncontrolled disease after stopping P, limited response to chemotherapy in the past and worsening myelosupression led us to reintroduce P at 400mg/d in combination with sirolimus 2mg/d with the intention of overcoming acquired resistance to P by inhibiting downstream intracellular mediators. Results: One week after P and sirolimus initiation, pain in a paracostal protruding lesion subsided with softening and a decrease in mass size. After six weeks a CT scan demonstrated a partial response by Choi criteria with an 18% tumor shrinkage and decreased enhancement. Most of the lesions were previously of mixed density and became predominantly necrotic. Treatment was very well tolerated. Conclusions: We report a renewed response to P with addition of an mTOR inhibitor in advanced pleomorphic undifferentiated sarcoma. Crosstalk between pathways, upregulation of PI3K/mTOR signaling along with a rebound effect stirred by cessation of VEGFR blockade may have all contributed to more aggressive disease at the time of progression and may explain reversal of resistance by the addition of a downstream inhibitor such as sirolimus. A study designed to prove this concept is underway.

**
Otherwise, FDA-approval of Cabozantinib is certainly good news and worth following up on. I hope there will be some more ASPS-specific information available in the near future. A treatment with “only” Cediranib or Pazopanib doesn’t seem to be a good long-term solution, since in most cases they don’t stabilize the disease for more than a few months or so. Perhaps combinations like VEGF + mTOR or VEGF + c-Met will prove more effective.

Take care,
Johannes

[Bonni Hess]

Dear Johannes,
Thank you for the thoughtful update and the very good news about Elisa's positive and encouraging response to her Pazopanib treatment thus far . I am sorry that her negative side effects are increasing , but am grateful that they still seem more tolerable for her than her previous Cediranib treatment was. The hair turning white seems to be a common side effect of Pazopanib and other TKI drugs such as Sutent, but interestingly not Cediranib. You didn't mention the status of the possible lesion close to Elisa's spine that you had discussed in your last post in March so I am Hoping that issue has been successfully resolved and the lesion was determined to not be an ASPS met. Also, since the March MRI of Elisa's thigh showed some increase in size from the post Cediranib MRI which was done more than a year ago, is another thigh MRI being scheduled soon to determine and ensure that the tumor is stable/shrinking and responding to the Pazopanib? Additionally, you indicated that Elisa is only having chest CT's to monitor the status of her disease. If other scans are not being done I would strongly encourage you to also request abdominal and pelvic CT's as well as a brain MRI and full body bone scan if these haven't been done since Brittany's experience and experiences of other ASPS patients has proven that chest CT's are not adequate to accurately determine disease stability, and unfortunately mets can show up in other areas of the body even if chest mets appear to be stable/shrinking. I have posted information regarding this issue in this Pazopanib topic thread based on an ASPS patient on a Pazopanib/Verinostat Trial whose lung mets appeared stable, was having shrinkage of her spinal tumor, but yet developed four brain mets which were sadly not diagnosed until they became symptomatic and had grown to one centimeter making successful treatment of them more difficult. A prime example of vigilant scanning is Ivan and Olga who are very pro-active in requesting and scehduling regular brain MRI's. Although Ivan's recent brain MRI unfortunately showed a four mm. brain met despite the fact that for eleven yours he had no metastasis beyond the lungs, the brain met was thankfully found at a small enough size that Ivan was able to have it quickly and safely resected.
The information which you shared about the linear tract extending to the skin in Elisa's thigh is very interesting. We have always felt that needle biopsies can spread tumor cells, and I completely understand and agree with your decision to not allow the NIH oncologists to perform biopsies on Elisa at the beginning and end of her Cediranib Trial participation at NIH. We also refused to allow the oncologists at Dana Farber to perform needle biopsies on Brittany during and following her participation in the GVAX Immunotherapy Vaccine at Dana Farber despite being assured by the oncologists that the biopsy would cause no harm or seeding of the tumor cells...Tragically several of the patients who participated in that Trial have lost their courageous battles, at least one of whom we personally know agreed to and underwent the needle biopsies, as possibly all of the others may have also. It is very important for patients to know that they CAN and SHOULD say no to procedures which they feel uncomfortable about having or have concerning questions and doubts about. It is your or your loved one's body and you have a right to protect it from possible harm from questionable practices that research oncologists who are more interested in collecting data than in the patient's well being may advocate.
Thank you so much for so thoughtfully sharing the very important information from your friend in the oncology field regarding the possible benefits of combining Pazopanib with an mTOR inhibitor to try to reverse acquired resistance to Pazopanib in soft tissue sarcoma. This valuable information may provide a possible new treatment option and Hope for those patients who have developed resistance to Pazopanib and perhaps even other TKI drugs like Cediranib and Sutent, and is something which I will continue to closely follow.
My most positive thoughts and very best wishes continue to be with Elisa and you, and I will be anxiously awaiting your next update. In the meantime, I Hope that you are both enjoying a wonderful start to your summer, and that Elisa will continue to be able to tolerate the side effects of the Pazopanib and have a continued very successful response to it. Take care Johannes, give Elisa and yourself special hugs from me, and keep in touch as you are able.
With special caring thoughts, healing wishes for Elisa, and continued Hope,
Bonni

[Ivan]

Thank you for the update!

I urge you to consider the fact that unfortunately the TKI will stop working after a while. Somewhere at the peak of the shrinkage, you absolutely need to have a plan in plan to resect the tumors in the most aggressive manner. Ablations of the big ones could buy years of life.

[Johannes]

Dear Bonni and Ivan,

Thanks for your quick replies.

I forgot to tell you about the lesion close to the spine. According to the radio-oncologist with whom we looked at the images, this does look like a met. He told us that you can never be 100%, but since the lesion decreased in size compared to the previous scan, it's probable that it's a met. He confirmed that this met could eventually become more problematic but also said that it's not that close to the spine. It could for instance be targeted with stereotactic surgery, even if it grew again. So we'll keep a extra-close eye on this one.

As for the scans, we always have to argue a bit with Elisa's oncologists... but thanks for reminding us, Bonni. I had already read the information you posted about the member who is participating in the Pazopanib/Vorinostat trial. Elisa's last CT scans of the thorax also included abdomen and pelvis (everything clean there!), but the next one is apparently only thorax. We asked for and should get another appointment for an MRI of the thigh; and the brain MRI that we requested months ago will be done in November (!). The first and only brain MRI that Elisa had done showed no lesions; this was in 2011 though, so it would be very good check again. No full body bone scans so far.

Ivan (good to hear from you and to see you in good shape!), I agree that it would be good to resect the biggest lesions at the peak of the shrinkage, or at least before they start to grow again. With these inhibitors you just never now in advance when exactly the peak is, right!?

Another question: do you know of anyone having experience with viral therapy / oncolytic viral treatment?

Thanks again and best wishes,
Philipp

[Bonni Hess]

Hello again Philipp and thank you for the additional shared information. I am grateful that Elisa's most recent abdominal pelvic CT scans showed no tumors, and that the spinal area lesion has decreased in size. Hopefully the decrease in the size of the suspected met is a result of it having a successful response to the Pazopanib and it will continue to shrink and ultimately disappear. However, it will definitely be very important to closely follow that met as Brittany's spinal area met which was initially located in her spinal muscle devastatingly spread quite rapidly and within six months invaded her spinal canal threatening spinal compression and paralysis. I think that another MRI of Elisa's primary tumor in her thigh definitely needs to be done soon to try to determine if it is responding to the Pazopanib with any shrinkage. Also, I strongly encourage you to request that the brain MRI be scheduled much sooner than November based on the brain met experience of the Pazopanib/Verinostat patient I have discussed, as well as Ivan having recently been diagnosed with a brain met which would most likely have not been found at such a small and treatable size if Ivan had not persisted in requesting regularly scheduled brain MRI's. I don't understand why some oncologists don't seem to recognize the critical importance of vigilant and thorough scanning in managing this metastatic disease which is known to metastasize to many areas of the body. However, since many doctors aren't pro-active with regular and adequate scanning for ASPS patients, it is important for the patients/family members to be pro-active and insist on it. You certainly shouldn't have to argue with Elisa's oncologists about the need for scans, but If you need anecdotal data to support your scan requests, you can always refer her oncologists to this site.
I am not familiar with the viral therapy / oncolytic viral treatment that you mentioned, but would be interested to hear more about it from you when your time permits.
With special caring thoughts, healing wishes for Elisa, and continued Hope,
Bonni

[Ivan]

Ivan (good to hear from you and to see you in good shape!), I agree that it would be good to resect the biggest lesions at the peak of the shrinkage, or at least before they start to grow again. With these inhibitors you just never now in advance when exactly the peak is, right!?

Yes, of course you can't never know when these things can stop working, or how long they will keep working. Personally, I would resect when they become at all resectable - as long as quality of life is not affected all that much - because who knows if you'd ever get the chance again?