Nhi from NY - Dx June 2016

[ntran727]

It seems the gastrointestinal symptoms experienced is from the newly developed food allergies to eggs and avocados that I never had previously. It all started around February when my eosinophil count became elevated and has remained elevated since then since I wasn't aware that I had developed the allergy and was eating both foods a few times a week at least. I have not had any further GI symptoms since stopping eggs/avocados.

The plan is to discontinue treatment after 2 years. I have been on immunotherapy for a little over a year, so if things go well we can stop next April (it's great to see an end in sight!). We will check scans in August and depending on that may either stay on Opdivo but switch to every 4 weeks infusion per the normal schedule or switch back to K at the every 3 weeks schedule and maybe increase to the 6 weeks schedule in the future.

Yes, I understand that the general treatments for sarcomas are not the same as for ASPS and ASPS seems to be more like melanoma and RCC which are actually my current oncologist's specialty. As for the mistletoe interfering with the K or O effect, based on my research it seems to be safe to use with immunotherapy. I have an article about it but can't attach it here as it is too large but did find it mentioned in the link below with mention of "This pilot observational study indicated that the ICI-induced AE rate was not adversely influenced by concomitant VA therapy. Further observational analyses have suggested that the combined treatment with ICIs and VA might even lower the AE rate including the immune-related AE rate."

https://www.hindawi.com/journals/ecam/2019/5893017/

Of course, there needs to be more studies with small sample size so hard to know for sure.

There is also a lot of data on melatonin re: radioprotective effects and stimulation of the immune system when given at high doses and I'm sure you can find many articles online about it. It actually does not cause drowsiness at the high dose at all and well tolerated. The 200mg did make me sleepy though when I took it before the scans.

[ntran727]

Hi everyone,

I had my 3 months updated scans including MRI brain, CT neck, chest, abd/pelvis with great results.

There is shrinkage in the skull met in the clivus where I was having the compression of the hypoglossal nerve leading to tongue weakness/spasms. The size went from 2.4 x 1.3cm to now 1.9 x 1.3cm. The other smaller skull and bone mets are stable in size.

The lung mets seem to be melting away and looks like some resolved.
-The previously 14 x 16mm nodule in RUL is now 4 x 4mm
-The previously measured 13 x 10mm nodule in RLL is now 6 x 4mm
-The LUL nodule is no longer visualized.
-The previously measured 4mm nodule in RUL now 2mm
-The previously measured 7mm RUL subplerual nodule is now 2mm
-The previously measured 4mm RML nodule is now 1mm.
-The additional nodules are decreased or resolved compared to prior. I had mention of 15 nodules consistently previously, so this is the first time since my diagnosis of the lung mets that some of them have actually disappeared!!

The rest of the bone mets appears stable and some with more signs of sclerosis. They did not measure them. When I look at my own scans, I definitely see more sclerosis and bones filling in in the areas where I see the big "holes" previously in my vertebraes, especially in the lumbar spine.

Interestingly, I've had flare up of my low back pain and sciatica symptoms since starting Opdivo 2-3 months ago and more stiffness, which I was hoping was a sign of tumor pain due to it working. My CRP level was slightly elevated at one point too which never happened before and then came back down to normal. I feel that was a sign the medication was working to kill the tumors and clean them up causing an inflammatory response. The back pain is better now and I will be going to Q4weekly infusions with Opdivo with the double dose instead of every 2 weeks as before. I have a meeting with my oncologist tomorrow but assuming she will keep me on the Opdivo + Axitinib combo instead of switching back to Keytruda.

I am still doing the same lifestyle changes although not as strict with my diet but following it strictly 90% of the time.

I am still using mistletoe injections and taking some basic supplements like fish oil, vitamin D, Osteoben (for my bones), and multivitamin.

I am getting fosamax infusions every 3 months for bones as well.


-Nhi

[D.ap]

Nhi,

Excellent and incredible news of lung tumors resolving !!

How are your thyroid levels looking ?

Joshua had neck pains and muscle stiffness , while on Opdivo .
Olga presented an article noting of these symptoms being a good indicator of a positive response to ICIs.
😊


https://cureasps.org/forum/viewtopic.php?p=12572#p12572

[ntran727]

Hey everyone,

I got my scans a few days ago.
The bone mets are all stable and some decreased slightly in size (like one in my skull). Some are sclerotic and some are lytic. I reviewed the images myself as well since they are all over my spine, ribs, manubrium/sternum, and in hip/pelvic bones.
The most problematic ones were in my lumbar spine/sacrum and I have a few decent sized ones in the cervical and thoracic spine as well.
I was having a lot more back pain for a few months, so I had an MRI of my spine which showed a pathologic fracture in my L4, with some disc desiccation and height loss. I spoke with interventional radiology regarding possible vertebroplasty, but decided it wasn't worth it. My oncologist thinks my bones could be weak from prior radiotherapy since the L4 was one of the areas I had SBRT for.
I was a bit worried since the measurements of the bone mets were a bit different from MRI vs. CT and I wasn't sure if I had progression or not. However, when I got the CT this time, there seemed to be no change compared to the previous, so that's good.
I have a 1.9cm lesion in my T12 and a 9mm lesion in my T5 now that is painful but also unchanged.

The lung mets are improving and reads as follows:
-The RUL 4 x 4mm lesion that was previously 14x16mm on this scan is unchanged
-The RLL 6 x 4mm that was previously 13 x 10mm is now 5 x 3mm
-The RUL 2mm nodule that was previously 4mm has disappeared
-The subpleural 2mm nodule that was 7mm before is unchanged
-The RML 1mm nodule that was 4mm before is also unchanged

So overall I started with 15 nodules and now have 4 small ones left at 1mm, 2mm, 4mm, and largest at 5 x 3mm. I am very happy with that.

Unfortunately my family and I contracted COVID right before my scans after we returned from a trip to New York. Thankfully I had very mild symptoms of just 2 days of flu-like symptoms followed by loss of smell (which has still not returned at this time), and mild congestion. Husband and kids had mild symptoms as well and we are all fully recovered. The CT chest showed some very small areas of inflammation/infection in the right lung that they did not think were metastasis. My oncologist attributed this to COVID which I agree with since it would be very uncharacteristic of ASPS to cause mets that looked like that and to appear so suddenly. She did not think I needed to treat it with antibiotics since I am completely asymptomatic. We plan to repeat the scans in 2 months instead of 3.

I am still on Opdivo and Axitinib and have no side effects from treatment. I still get premeds with cetirizine and famotidine prior to my infusions just in case I get some sort of allergic reaction. I added Low Dose Naltrexone, still doing Mistletoe injections and adding some additional supplements. I also started taking Loratadine and Aspirin which can help with cancer (repurposed drugs) and it seems to be helping the inflammation since my back pain feels a lot better. I did also take Ivermectin for 5 days and since it is also a repurposed drug for cancer blocking multiple metabolic pathways for ASPS, I plan to take it 3 days on 4 days off and see how it goes. I plan to talk to my oncologist about other off label drugs that can be used as well in the future, if I need it. For now, will just make some adjustments to my supplements. Still keeping up with diet and exercise and other lifestyle changes which will be lifelong at this point.

My oncologist said if everything is stable by the time I get to 2 years of treatment, which will be in June, she plans to give me a break off both the immunotherapy and axitinib and see how I do. It's hard to believe that I'll ever get there, but very hopeful that my immune system can continue to work to eliminate the cancer.

[D.ap]

Hello Nhi ,

Excellent news on lung tumors, as well as the possiblity of discontinuing treatment.

Question-
With your pepcide use, could it be inhibiting your axitinib known qualities ,of keeping bone loss down . Your addition of Fosomax , which you’ve been doing for some time seems to of not aided you in your spine issue after SBRT very well , as well as other not with other spine issues.

I know some anti acid meds can and will do just that , interact with the TKIs and suppress their original known affects.
https://www.thelancet.com/pdfs/journals ... 0458-9.pdf

[ntran727]

That’s a great point Debbie, which I completely forgot about haha. I didn’t take Pepcid or other antacids in the beginning for that reason and only took it when I had COVID since it is an antihistamine as well and dampens the cytokine storm. I was worried that it was going to get worse but it didn’t. I’ll stop Pepcid and likely continue loratadine. The Pepcid otherwise is only given as premeds before my monthly infusions. I wonder if the axitinib is even doing anything since I stopped it for a month a while back due to my GI side effects and nothing grew. Usually when stopping TKIs I get rebound growth. Will be interesting to see how it goes after stopping treatment in June if I get there with continued stability.

[D.ap]

Yes it’s a challange when taking multiple meds to know which way to jump .
Overall the news is wonderful to hear !😊

[Olga]

Great scan result Nhi. Lungs most likely have the focal areas of inflammation damage after Covid. Deb recently reported that Josh also had some areas appeared between the consecutive scans out of blue and were even biopsied and it was inflammatory/infection.
Also Deb it was a great point with the drugs interaction. I was reading all the list what Nhi takes and was wondering if these were evaluated re. that interaction. Ivan takes lots of supplements and I am not even able to keep up with the possible interaction with his steroids replacements. But he is off any treatment now for oncology.
Nhi, if your body responding to ICI, it is not that easy to make it forget about the target. Once it started to eat sarcoma cells, they are registered as enemy so lets hope the immune memory will be durable. Try not to overwhelm the immune system with the multiple drugs, as there might be unintended consequences. If it goes well, perhaps you just need to stay on what you have.
Re. 1.9cm lesion in T12 and a 9mm lesion in T5, even necrotic/calcified tissue might be a big problem there, and post irradiation damage to the spine is the well known consequence too. I guess you will need to start working on stabilizing the spine soon.
Overall it is a great result, it was looking very scary 2 years ago. You've come a long way.

[D.ap]

Hi Nhi ,
How are you ?
At what point in your treatment did spinal Mets show up ?
With your original scans before and after your primary was removed, were there any bone Mets visible ?

[ntran727]

Hi everyone,

It has been so long since my last update. Here is the summary of what has been going on since my last update:

PET scan done 3/2022 showed near resolution of the pulmonary nodules with 2 left measuring 2mm (previously 1.2x1.0cm) and a 1mm lesion. My oncologist took me off Axitinib as a result and continued on Opdivo.

I started to develop worsening tongue weakness since then and the subsequent scans showed that the right clivus met (in the skull) was growing. However, other mets were stable so we did not resume Axitinib. I consulted with the rad onc who thought it could've been post-radiation inflammation and they weren't sure if it was tumor growth. We kept watching with subsequent scans in which it would grow very slowly. My symptoms ultimately stabilized so it was not recommended to radiate more since the risks outweighed the benefits.

In the December 2022 scans, the right clivus met was finally stable and stopped growing and the PET showed stability in other mets with decreased SUV uptake, so I stopped Opdivo in January.

We moved from California to Georgia in November 2022, and I was flying back and forth to California for my scans and infusions. I did not switch to my new job until March this year and was working remotely with my old job. I went off my diet, supplements, and had some adjustments/stress to deal with although good stress. I started to become more symptomatic between December to March with increased pain in my right 3rd rib and femurs causing me to walk with a limp.

Looking back at my PET scans, the RT 3rd rib met showed up on the PET scan from 3/2022 along with uptake in the proximal femurs bilaterally, right before I stopped axitinib. My oncologist did not catch that and thought the uptake from the femur was just reactive and not tumor related. The radiologist did not comment on the size or feature of the femur mets on subsequent scans, so it was just ignored. I was having pain so I suspected it was tumor related and when I had my scans in March (last month), it was done at another site and they mentioned the growth in the femur mets as well as the rib met. I also had significant growth in the right clivus met (originally 0.9cm and now around 2.4cm) and it is extending into the jugular foramen.

I developed swollen glands in my left neck about a month ago and had fever, chills, fatigue, headaches, body aches along with it. It got better after 2 weeks then came raging back causing extreme neck pain and stiffness along with the above symptoms again. We decided to biopsy it, but the biopsy results came back inconclusive. The lymph nodes subsequently resolved so I still don't know if it is ASPS related or not.

Compared to the PET scan in December and one I had in March, the femur mets grew by about 1cm, rib grew from 1.9 to 2.6cm and I also have a left iliac lesion that grew from 1.6cm to 2.3cm. The lungs are still ok. It has been difficult to keep track of all the bone mets since the radiologist does not report them all. I do look at my own scans and can see the difference.

I met with my new oncologist here in Atlanta, GA and he is from Emory, Dr. William Read, who is a sarcoma specialist. He recommends that I go back on treatment and suggested several options including either going back on a TKI (Axitinib until it stops working and then try a different TKI or resuming immunotherapy. However just going back on one immunotherapy alone would not work since I had progression on it, so he suggested the Ipi-Nivo combination (Opdivo/Yervoy) and further radiation to the femur to get the abscopal effect. I agreed with this although I know the risk for side effects is high with the combination. We could go back on Opdivo + Axitinib as well, but the femur and rib mets showed up before I even stopped Axitinib now that I look back on my scans. It is likely that I developed resistance and these tumors are ones that have mutated.

I met with the neurosurgeon as well about the Clivus met and he thinks that they can do surgery to remove it if needed, using a minimally invasive technique going through the nasal passage. However, we will wait to see if the systemic therapy will work first.

I have resumed my diet and supplements in the past 6 weeks which seemed to help a lot with the pain/symptoms and had a repeat PET scan to establish a baseline a week ago and everything looks stable in size with decreased uptake on the active lesions compared to the previous scans, so the diet is helping at least to control it for now.

I will be starting Ipi-Nivo in 2 weeks - first infusion on 5/10/23.

[D.ap]

Hello Nhi ,
I’m truly glad to hear of your good stress happenings but sorry to hear of the tumor increases, which have offset the good stress to a degree .
So your biggest increases are on your femur and on the base of the skull ?
What kind of radiation will be administered to the femur and at what point in the schedule during the yervoy/nivolumab infusions?
I assume the radiation would be scheduled after you are through with the yervoy?

[Bonni Hess]

Thank you for your thoughtful update dear Nhi. I am SO VERY sorry for the increased growth of some of your mets, the new rib met, and your increased pain. You have been on such a challenging roller coaster throughout your ASPS journey, and yet you admirably continue to move forward with your busy Life, your job, moving, etc. You are truly an incredible young woman, and a great inspiration to our ASPS Community. My VERY best wishes are with you for a VERY successful outcome to your upcoming renewed Opdivo/Yervoy treatment with significant tumor shrinkage/disappearance and sustained stabilization of your challenging disease. Reaching out to embrace you with gentle hugs, healing wishes, and continued Hope, Bonni

[jcs2007]

Thanks for the update and I hope you are adjusting to life in Georgia. I’ve heard good things about Emory so I hope they find the right systemic treatment. We will be discussing a new systemic treatment for my son as well since he had progression. One option mentioned is the opdivo/ Yervoy too. Sending hugs from Florida!

[ntran727]

It will likely be SBRT Deb, don’t want too much radiation for it to be immunosuppressive.

Thank you Bonnie for the kind words and caring thoughts. Your messages are always so uplifting and I love reading them. I am very optimistic about this combination and have been wanting to do it for a while now. Just praying that it won’t give me horrible side effects. Hoping it will wipe out the remaining cancer and I will be free! :)

Cindy - sounds like this would be a great option for Sam, let me know how the meeting goes.

[D.ap]

Thanks for the update Nhi ..
Do you feel the lung study after SBRT , could apply to a response in your bone Mets after your scheduled treatment up and coming ?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6505218/