Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Hello Nhi,

I’m sure thinking of you today and hoping you are getting the much needed info to move forward in your care.

When we had our cyroblation with Joshua’s liver back in April of 2020, we discontinued our axitinib for just a brief time . Keytruda was not stopped.

Write when able.

Love ,

Thank you so much for your thoughtful update and the mostly positive news dear Nhi. I am so grateful and encouraged for your increased mobility and the stabilization of your bone met growth with your Keytruda/Axitinib treatment, but am sorry for your continued concerning lung met growth. We have learned during our challenging now 19+ years of ASPS experience, that not all ASPS mets respond to the same treatment, and are, as Brittany's very knowledgeable and astute Clinical Trial oncologist Dr. Sawyer describes, " non players". Because of the seeming unresponsiveness of your lung mets to your Keytruda/Axitinib treatment, I agree with Olga that you should probably pursue Cryoablation for your largest lung mets to prevent them from growing too large to successfully treat and destroy with ablation. In the meantime, take care, enjoy your precious baby girls, keep in touch as you are able, and know that you are being held very close in my heart and special thoughts with deepest caring and continued Hope, Bonni

Nhi
An all encompassing /educational article on ablative procedures .😊

viewtopic.php?p=15310#p15310

Hi all,

My oncologist decided to hold off on referring me for cryoablation last time. The plan was to change systemic treatments if the lung Mets are still growing during these scans.

I am happy to report that I just had 2 month scans a few days ago and for the FIRST time in almost 2 years, there is stability of the lung Mets and some shrinkage of some of my bone Mets!!!! I am so overwhelmingly filled with joy because I feel that I’ve been working so hard these last 8-9 months to transform my body, mind, spirit, and soul through diet, exercise, meditation and learning how to release and deal with my emotions. It has been a beautiful journey inwards and I’ve enjoyed it so much. I’ve lost about 8lbs but maintained all my weight and have a 6 pack I’ve never been able to get my whole life despite vigorous exercise and trying to diet, as a bonus :)

3 out of the 4 skull Mets decreased in size just a few mm but over 2 months. Many of the tiny bone lesions in my spine, femur, iliac shows more sclerosis and appears more dense on the scans signaling healing. The lung Mets are the same size with 1 decreased and 1 increased slightly by 1mm or so. There are NO NEW METS!!

Interestingly I developed epigastric pain intermittently over the past 1-2 months or so. Wasn’t sure if it was from cheating with my diet or stress with family or something else. We held K+A due to concern for possible autoimmune gastritis and I started an antacid. It did get better so we resumed treatment and now my pain in gone even off the antacid for a few weeks now. The other interesting thing is that my eosinophil count increased. Normal is 0-6% and mine went from 7% to 20% in February then to 30% 3 weeks later and then finally to 50% 2 weeks ago when we resumed my treatment. Apparently eosinophilia can occur with ICI drugs and indicate a better response to treatment. I saw this as a sign that my immune system finally woke up and was pleasantly assured of this response following my latest scans. If asymptomatic (which is what I’m considered to be at this time), then we can continue treatment with careful monitoring. If my stomach pain returns, plan will be to get an endoscopy and biopsy to rule out autoimmune gastritis which would mean I would have to stop treatment.

Sharing in my happiest news for a long time,

Nhi

Nhi
thank you for this awesome update. We are overjoyed with your good news. ICI drugs are weird and indeed perhaps your immune system or microbiome improved enough for it to be able to recognize the tumors. Once it found the target and recorded the info about the target type in the memory cells, it is going to keep hunting for the same all around the body! Good muscle mass and low stress life helps as well to keep the overall inflammatory processes in the body low and not to distract from the more important things to do.
You give a hope to other ppl who might be not having the immune response at the moment, that with the good work targeted at the improving the immune system, microbiome and muscle mass, the immune response might be improved.

Thank you Olga. I am overjoyed as well and really wanted to share because I know that lifestyle choices can and do make a huge difference in response to treatment as well as the ability to cope and deal with all aspects of the treatment itself whether it be physical or emotional. Even with the cancer continuing to grow, I felt immediate relief of pain and had much more energy to be able to think clearly and focus on healing which just became a snowball effect. The rest of the benefits just came in due time. Thank you for all the support!

Hi Nhi,

The news is awesome !!
Sounds like you all have a plan with all that COULD be an issue and that’s half the battle .

Sharing in your joy today and always .
Love ,

Nhi - would you be willing to make a short post in the Diet and lifestyle subforum to share what strategy you used to improve the response to ICI? I have seen some of your comments but it might be of interests for other ppl to be done in a more systemic way, with the possibility of discussion and question.
viewforum.php?f=53

Thank you Debbie. Yes, Olga, give me some time and I will post. I want to share anyway and have been meaning to write it all down. Just have to be careful not to give any misguidance or wrong information so I will keep it anecdotal since the same things doesn’t work for everyone.

ntran727 wrote: Mon Mar 29, 2021 8:31 pm Hi all,

My oncologist decided to hold off on referring me for cryoablation last time. The plan was to change systemic treatments if the lung Mets are still growing during these scans.

I am happy to report that I just had 2 month scans a few days ago and for the FIRST time in almost 2 years, there is stability of the lung Mets and some shrinkage of some of my bone Mets!!!! I am so overwhelmingly filled with joy because I feel that I’ve been working so hard these last 8-9 months to transform my body, mind, spirit, and soul through diet, exercise, meditation and learning how to release and deal with my emotions. It has been a beautiful journey inwards and I’ve enjoyed it so much. I’ve lost about 8lbs but maintained all my weight and have a 6 pack I’ve never been able to get my whole life despite vigorous exercise and trying to diet, as a bonus :)

3 out of the 4 skull Mets decreased in size just a few mm but over 2 months. Many of the tiny bone lesions in my spine, femur, iliac shows more sclerosis and appears more dense on the scans signaling healing. The lung Mets are the same size with 1 decreased and 1 increased slightly by 1mm or so. There are NO NEW METS!!

Interestingly I developed epigastric pain intermittently over the past 1-2 months or so. Wasn’t sure if it was from cheating with my diet or stress with family or something else. We held K+A due to concern for possible autoimmune gastritis and I started an antacid. It did get better so we resumed treatment and now my pain in gone even off the antacid for a few weeks now. The other interesting thing is that my eosinophil count increased. Normal is 0-6% and mine went from 7% to 20% in February then to 30% 3 weeks later and then finally to 50% 2 weeks ago when we resumed my treatment. Apparently eosinophilia can occur with ICI drugs and indicate a better response to treatment. I saw this as a sign that my immune system finally woke up and was pleasantly assured of this response following my latest scans. If asymptomatic (which is what I’m considered to be at this time), then we can continue treatment with careful monitoring. If my stomach pain returns, plan will be to get an endoscopy and biopsy to rule out autoimmune gastritis which would mean I would have to stop treatment.

Sharing in my happiest news for a long time,

Nhi

Excellent stuff. Any downward shrinking in ASPS mets in 2 months is basically very rapid response. Eat a high fiber diet with lots of polyphenols, or even supplement them. Stuff like quercetin: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5086580/ Be careful with having too low of a body fat percentage on ICI therapy and in general health as well, especially as a girl. It may feel cool and awesome for a while, but may create issues in the long run.

What's your vitamin D levels and what genetic polymorphism do you have? Any genetic test like 23andme can allow you to find out. I just found out I have the worst VDR polymorphism of all, and my vitamin D levels are 3x lower than would be optimal even though they are in the lower range of normal reference ranges. I supplement 2000 IU every day for 3+ years and spend time outdoors, too. Very implicated in autoimmune disease.

Thanks for posting about nutrition because my son has gotten away from this for different reasons which I felt at least helped him to recovery from surgeries quicker. His blood pressure and pulse are higher now especially once he started radiation treatment. Going to have his Vit D checked too.

Yes, I’ve read many books on the nutrition aspect and it was hard for me to decide on a more Whole Foods plant based diet vs. keto diet, so I ultimately combined the two and are mostly just eating fruits, vegetables, healthy fats and proteins. I don’t really eat extra carbs that are not in fruits and veggies. I try to eat about 20-30 different veggies per week and stick with the low sugar fruits like berries to make sure that I’m eating all of the most cancer fighting foods that contain the polyphenols like flavonoids and others. I check my ketone levels as well to make sure I am in ketosis.

I am seeing a naturopath who recommended the nutrition genome testing which helps to determine my weaknesses and strengths in terms of genetics and I do have the polymorphism with the vitamin d as well along with some of the other sensitivities that guided my recommended diet. I stay away from dairy for example due to being partially lactose intolerant but dairy is inflammatory in general along with some foods like gluten so I just stay away from them to decrease any possible chronic inflammation in my body. She recommended some supplements specifically based on my genetic report and for the treatment I am on which helps to boost the immunotherapy such as vitamin d + k, multivitamin, fish oil, b complex, osteoben (for my bones), reishi. I am also looking into low dose naltrexone and mistletoe but haven’t started it yet. She did also mention melatonin but I decided not to take it for now. My vitamin D level went from low 20s to around 90 so now I maintain and take 5000 units every other day. Optimal range for cancer should be at least 70s based on what I’ve read.

I will post more details when I have the time regarding the nutrition aspect but I do think that doing all of it (meditation, exercise and nutrition) are very important, especially the mind aspect of it which helps to stay focused on everything else and really helps to get in tune with the body.

I found that making these changes eliminated pretty much all the side effects I would’ve gotten from the drugs and radiation treatments (had SBRT to 7 different bony sites) with barely any symptoms). I forgot to mention that fasting also helps a lot to recover faster from the radiation and when I feel really symptomatic from my treatments.

Hi Nhi ,

How are you ?
In reading back on your prior post , I assume the naturopath reviewed your metabolic profilest of zinc and copper and lead?

Also what’s the latest consensus on fish oil and mercury values ? And the usage of flax seed oil instead ?

In your ketosis testing , what level are you shooting for with your diet?
As the ketogenic diet is used in conjunction with brain tumor treatments , how are those studies looking for success in systemic treatments with Keytruda ?

Hi everyone,

The last 3 months were eventful.
I experienced some flare up of symptoms including locking and spasming of my tongue as well as frequent abdominal pain.
The tongue issue stems from the base of the skull (clivus) lesion found 2 years ago that was treated with gamma knife in New York. The tumor had infiltrated part of my right hypoglossal nerve at that time and caused a weakness in the right tongue with deviation. I regained about 90% of the function after the gamma knife treatment I would say, but would have trouble from time to time especially when eating foods that are hard to chew. This led to frequent right jaw pain/headache assumed to be from TMJ.

The tongue problem flared up significantly in April and May when I had a lot going on like the twins' 2nd birthday, my in-laws coming to visit from NY for 3 weeks and husband and I traveling to Hawaii for our 5 year anniversary. These were all "good stress" but stress and disruption of my routine nonetheless. I meditated and exercised much less and cheated often with my diet. As a result, I experienced spasms and locking/deviation of my tongue multiple times a day and developed jaw pain/headache on the right side. It got so bad my other jaw was starting to lock up.

I finally told my oncologist about it in May due to fear that the lesion had grown and she ordered a new MRI head. The result showed a slight increase in size from 1.1cm to 1.3cm in one of the dimensions although difficult to measure due to all the planes. Other lesions in the skull were stable and no new lesions in skull or brain. She spoke with radiation oncology to see if I would benefit from more radiation to the area and they requested a PET scan to see if there is activity or if just inflammation from prior treatment.

While waiting to get my PET scan early May, I went back to my routine after all of the festivities and my tongue problem improved significantly and no more jaw pain/headaches. I figured I would go through with the PET scan anyway just out of curiosity since I have not had one for 2 years. The PET showed very low activity in the skull mets and I had activity in my bone mets throughout the spine, manubrium, sternum, and they noted that my right 2nd rib was fractured, likely pathologic (this rib met was not mentioned in prior reports). I did have pretty severe pain in that area for a week thinking I strained my chest muscle from yoga and just rested it for 1-2 weeks or so. They did not see any activity in other areas that were not mentioned before from my CTs.

The lung nodules barely showed any activity, but the best news is that they all shrank! and by a good amount!
For example, a previously 1.4 x 1.6cm decreased to 1.2 x 1.0cm; a previously 1.3 x 1.0cm decreased to 0.7 x 0.6cm; a previously 1.2cm now 0.8cm, a previously 1.0cm now 0.7cm, and the other small ones are either stable or decreased in size.

They did not measure all of the bone lesions since it was not the usual CT scans I get routinely, but overall did not look like there were much changes. They did have moderate FDG activity between 2-4 maximal SUV.

In regards to the stomach issue - this started around February when I had intermittent upper abdominal pain. I told my oncologist about it in March and we decided to monitor, have me try some antacids and then plan for endoscopy to rule out autoimmune gastritis/esophagitis which is rare but could related to ICI therapy.

I also had an infusion reaction on April 7th to K for the first time and presented with onset of itching, sneezing, runny nose, watery itchy eyes, rash at the IV site, throat and tongue felt tingly and tight, nausea, stomach pain and dizziness. Ultimately I was given IV solumedrol (steroid) due to the throat/tongue feeling swollen to be on the safe side. The symptoms immediately resolved after the IV steroids were given and I was ok after that with no ongoing symptoms.

I was due for my next infusion on April 29th, but had mentioned the continued stomach pain, so my oncologist decided not to give the infusion, told me to hold axitinib as well and referred me to the gastroenterologist. I had my upper endoscopy on May 12th. The result came back thankfully with no autoimmune process and mostly normal with some signs of reflux at one area. She presumed the stomach pain was from the axitinib but wanted me to resume the regular dose with the antacids with plan to decrease the dose if my pain continued.

I actually noticed that I was getting the pain mainly when eating eggs and avocados which I ate almost daily since I switched from my vegan diet to more keto based diet in February. I didn't eat eggs for 3 months during the time I ate the vegan diet but had never had issues to eggs before. After noticing that I would get severe stomach pain followed by nausea and vomiting after eating those foods (got worse and worse each time), I realized that I may have developed an allergy to these foods. I cut them out and had no symptoms. I never actually took any antacids as to not mask my symptoms. Ended up getting allergy tested and came back with allergy to egg whites, egg yolk and avocados as suspected.

My oncologist decided not to resume K due to the infusion reaction on April 7th and started me on Opdivo instead when we resumed immunotherapy on June 2nd (which means I had a 2 months gap of not being on any immunotherapy). I received the half dose planned for every 2 weeks instead of the monthly dosing since it is similar to K. I ended up with the same infusion reaction as I did with K on Opdivo, except not as severe and without the abdominal pain and nausea. The symptoms resolved with zyrtec. I was given premeds with Pepcid + Zyrtec with my last 2 doses on June 16th and today and had no reaction.

The plan is to continue Opdivo for the next 1-2 months and if I do fine, we may switch back to K after my next set of scans due in August.

I was off all of my supplements for about 2 months to make sure that the stomach pain wasn't from that and resumed them all without issues. The supplements I take are a multivitamin, vitamin D + K, fish oil, vitamin B complex, osteoben (for bones while on fosamax), melatonin (high dose of 80mg daily and 200mg 1 hour before scans to protect against radiation effects) and then some others like Reishi mushroom extract, a probiotic she recommended based on my nutrition genome report, and Serratia (which helps to lower my fibrinogen level).

I also started on mistletoe injections which are used widely as an alternative and complementary treatment for many cancers, including sarcomas. I did a lot of research on it and it seems very promising especially as a safely used adjunctive treatment to conventional treatment including immunotherapy. It is known to improve quality of life related to treatment side effects, pain and well being. Here is a good site I found that has info about it if anyone is curious to know: https://www.journey2life.org/post/mistl ... rtreatment
Other articles about mistletoe being used with sarcoma and other articles:
https://pubmed.ncbi.nlm.nih.gov/22010781/
https://hub.jhu.edu/magazine/2014/sprin ... py-cancer/
https://pubmed.ncbi.nlm.nih.gov/25552476/
in Osteosarcoma: https://www.mistletoe-therapy.org/scien ... teosarcoma

She also recommended low dose Natrexone which I have not started yet. Low dose Naltrexone "may enhance natural killer cells, T-Cell, IL-2, and TH-2 activity via the mu receptor and also by binding to receptors on cancer cells themselves. These cells are the major players in our body’s natural immune system." See links below if you are curious:
https://www.medshoprx.com/blog/low-dose ... r-patients
https://www.spandidos-publications.com/ ... .2016.3567
https://www.sciencedirect.com/science/a ... 6918302315
I will likely start it soon and will write my experiences with it.

Deb - my naturopath actually didn't check my zinc, copper and lead levels. I get my routine labs that my oncologist orders along with LDH, fibrinogen, ESR, CRP, and Vitamin D from her but oncology labs are very comprehensive already. I'm not sure about the latest consensus on the fish oil/flax seed oil. The level for ketosis is supposed to be around 3 for cancer, but it is impossible for me to get there, so I usually try to stay around 1. I'm doing a very modified keto diet since I don't eat dairy products, and limit to just turkey, chicken, fish and other seafoods. No red meats. Nothing processed. Everything organic. No grains/legumes since high in carbs but do eat plenty of good nuts. Wide variety of veggies - try to aim for 25-30 different ones per week, get it from a local farm share. I limit the high sugar fruits as well and stick with mostly berries. The ketogenic diet is very effective for brain tumors, not sure how effective with ASPS but best to stay away from sugar anyway since all cancers will thrive on that.

I know it was a VERY long update, so if you read up to here, I'm impressed!


Take care everyone,

Nhi

Nhi. the update is excellent - good reading and very informative and thoughts provoking. SO as I understand, the consensus for now is that the symptoms are treatment related and if the overall inflammatory level in your body increases, it causes the worsening of the symptoms? the newly developed allergy might add to that. The fact that you had the acute reaction to K and to a less extend to O, might mean you are having the major ongoing immune activation and the immune system is already actively attacking the tumors. Statistically found that when lung mets are attacked by the immune system, the overall tumor precognition is durable, with memory cells forming and keeping. I would say being on half dose is right and may be think about discontinuing at some point
As for the general treatment for sarcomas, ASPS does not usually repond to drugs other sarcomas do, so there is no cross reference possible.
Try not to interfere with the K or O effect. Try not to reinforce the immune system components that pro-inflammatory or allergy related.
I never hear re. high dose melatonin as the radio-protector. I would be dead on 5mg though, how do you stand it that high?