Jack from Los Angeles - Dx Feb 2021

[Couchpotato1999]

Hello, I'm Jack from Los Angeles. I was diagnosed in February of 2021.

Had surgery to remove the primary tumor from my lower right back at the beginning of March. Tumor size was 5.8 cm x 4.7 cm x 8.4 cm. Lucky MRI from March showed no visible mets in the brain yet.

There are a lot of mets in the lungs. One that's 18 mm, one 15 mm, around 8 more mets under 10mm, and over 50 micro-nodules. No symptoms.

Currently on Pembrolizumab, have already completed 5 injections out of 6, with very minimal side effects so far.

Latest CT scan does not show any positive response to the Pembro, so now I'm starting Axitinib. Hopefully the TKI will help.

[Couchpotato1999]

Forgot to mention I'm 35 yrs old. I'll update after the next CT scan result comes out and see how the Pembro + Axitinib combination is working.

[ntran727]

Hi Jack,

Welcome to the forum that I'm sure no one wants to be a part of, but glad that you found it since there is a lot of support and great information here.

I'm glad they were able to remove your primary tumor, hopefully with negative margins?

The lung mets are common and it's great that you don't have any other mets including the brain. I am assuming they checked the abdomen/pelvis as well before starting you on pembro.

I took am on the pembro + axitinib combo but was recently switched to nivolumab because of an infusion reaction I had with pembro 1 year into it. I did not have any major side effects before that. The axitinib is very well tolerated compared to other TKIs that I was on including Votrient and Sutent, so hopefully you will tolerate it well.

Did the latest scans show any growth of the lung nodules or did they just stay the same? Stability would be a good sign that the pembro is working, but can take longer to work.

Wishing you the best for your next scans!

-Nhi

[Couchpotato1999]

Thanks Nhi, yep the tumor was removed with 1mm negative margin. And recent CT scans show there was no new growth in the surgical area. Also the abdomen / pelvis was free of cancer.

The 2 largest tumors actually grew around 50-75% after 4 Pembro injections (CT was done on the 14th week after starting Pembro). So we're not sure if it's pseudo-progression or real progression.

I hope it's pseudo-progression...because it doesn't seem to be growing fast enough for hyper-progression. Plus my abdomen / pelvis was clear.

Since my side effects from Pembro are almost non-existent after 5 injections (with the only side effect being the feeling of pins and needles all over my body when I get hot, but then the feeling goes away if I start sweating continuously...maybe it's some form of pruritis), I wonder if it makes sense to ask my doctor if he can add a little bit of Ipilimumab like that success story of the dual immunotherapy.

Because the tumor could be getting bigger because it's reacting to the Pembro....so that little bit of Ipilimumab might do the trick to tip the scales in the battle.

[Olga]

Hi Jack,
it looks like Ipilimumab is irrelevant to ASPS due to its genetic make up. Perhaps you should discuss with the treatment team if one or two of your faster growing lung mets could be treated with the SBRT, sometimes it causes better tumor recognition by the immune system. This is of course if the next CT scan will show the continuing growth. If it is a pseudo progression, there should be no growth - stability or reduction comparing to the scan you had. Sometimes there are non responding mets, just occasionally. They need to be treated locally even if there is systemic response.
You said that CT that showed this growth, was done on the 14th week after starting Pembro. What week are you on now? 6 months mark is considered a statistical cut off for the pseudo versus real progression, when in most cases it is possible to say.

[Couchpotato1999]

Hi Olga, I read that Ipilimumab is supposed to target the CTLA-4 so that CTL's can kill cancer skills. Do you mean that CTL does not kill ASPS?

I'll ask the doctor about the SBRT the next time I see him.

My first infusion was on April 8th, and the CT Scan was done on June 22. I had 4 Pembro injections between that time, and I just got my 5th one on July 1st.

Thanks, I appreciate the info!

[Couchpotato1999]

Also, I got the Ipilimumab from the success story of that patient who had full response after dual immunotherapy.

[ntran727]

Hi Jack, when I had a discussion with Dr. Breelyn Wilky, she did say that she would use ipilimumab for some patients that don’t respond to immunotherapy drugs alone or the immunotherapy + TKI combos. Usually it is the nivolumab + ipi combo though and it’s not used with Pembro, unless there has been off label use. The side effects are much more likely thought because it works at an earlier gate to unleash the immune system, so that’s the downside. We did have some patients with success to that, mainly Carolyn Cave from the Facebook group that is now in remission.

I also agree with Olga about trying SBRT to help.

Making sure to exercise and stay fit and eat a lot of varieties of fruits and veggies to help boost your immune system is key as well so be sure to work on that while on treatment. I was on Keytruda for almost a year with continued growth and finally just turned the corner after intensely working on lifestyle changes and although I cannot be sure what did it, something seemed to help kick my immune system into gear.

[Olga]

Hi Jack,
it is a bit complicated, but in some tumors their cells utilize the CTLA-4 pathway to suppress initiation of the immune response, leading to decreased T cell activation and proliferation into memory T cells, which are key to mounting an effective long-term immune response against tumor antigens. Therefore, blocking the CTLA-4 inhibitory pathway using immunotherapy can help restore the immune anti-tumor response by increasing accumulation, function and survival of T cells and memory T cells, while inhibiting Treg activity. Inhibition of effector T cell differentiation, memory generation and enhancement of effector T cell exhaustion highlights another prime reason CTLA-4 is a target for immunotherapy.
I vaguely remember that some our patients tumors were tested for the appropriate receptors that would make ipilimumab relevant in ASPS and they did not find it. i.e. ASPS tumors does not seem to utilize that pathway to suppress the immune system. On the other hand, it was noted that with PD-1 inhibition the presence of receptors does not translate into efficacy and vise versa, ppl without expression might respond. So it might be not that relevant anymore, the expression. There is very little information re. possible benefit in adding CTLA-4 inhibitors to PD-1 inhibitors in ASPS.
There is one published report when in ASPS patient adding ipilimumab after the early signs of progression while on nivolumab (another PD-1 inhibitor like pembrolizumab) lead to near-complete response, but it should be noted that in many cases simply continuing the same single PD-1 inhibitor eventually causes the same effect even after initial non response or it might have been a pseudoprogression, although in some cases it does not.
https://www.liebertpub.com/doi/10.1089/ ... %200pubmed

[Ivan]

Hello, I'm Jack from Los Angeles. I was diagnosed in February of 2021.

Had surgery to remove the primary tumor from my lower right back at the beginning of March. Tumor size was 5.8 cm x 4.7 cm x 8.4 cm. Lucky MRI from March showed no visible mets in the brain yet.

There are a lot of mets in the lungs. One that's 18 mm, one 15 mm, around 8 more mets under 10mm, and over 50 micro-nodules. No symptoms.

Currently on Pembrolizumab, have already completed 5 injections out of 6, with very minimal side effects so far.

Latest CT scan does not show any positive response to the Pembro, so now I'm starting Axitinib. Hopefully the TKI will help.

Just over 3 months is possibly too short to see a response. Is there a suitable target for radiation? That might trigger the immune response.

[Couchpotato1999]

Hello, I'm Jack from Los Angeles. I was diagnosed in February of 2021.

Had surgery to remove the primary tumor from my lower right back at the beginning of March. Tumor size was 5.8 cm x 4.7 cm x 8.4 cm. Lucky MRI from March showed no visible mets in the brain yet.

There are a lot of mets in the lungs. One that's 18 mm, one 15 mm, around 8 more mets under 10mm, and over 50 micro-nodules. No symptoms.

Currently on Pembrolizumab, have already completed 5 injections out of 6, with very minimal side effects so far.

Latest CT scan does not show any positive response to the Pembro, so now I'm starting Axitinib. Hopefully the TKI will help.

Just over 3 months is possibly too short to see a response. Is there a suitable target for radiation? That might trigger the immune response.

Not sure if there is a suitable target for radiation, I'll check with the Oncologist.

[Couchpotato1999]

Thanks for the info Olga, appreciate it.

Nhi, I am also trying to keep up with the healthy habits. So I've been eating only Fish and Plant Protein, eating only Avacado Oil / Olive Oil / Barlean's Flax Oil (non-rancid). I've also been avoiding processed food, fried foods, added sugar, carbs, and all forms of dairy.

I've also given up coffee, so now I drink green tea only. I'm so glad that I'm not taking Sunitinib, because green tea is my only form of caffeine intake. I don't know what made me more sad, giving up coffee or fining out that I had cancer (probably finding out I had cancer lol).

[Couchpotato1999]

Oh and I've also started running 2 miles in the morning 5 days a week, and weight lift 3 times a week.
I'm hoping that the cardio will help, I haven't done cardio in a while. (never liked cardio, was always more of a sprinter in high school as opposed to a long distance runner).

[Olga]

Jack, you are doing great esp. in physical activity! But what is the rationale for giving up the coffee? Coffee, tea and chocolate - they all contain very valuable polyphenols - such as catechins and chlorogenic acid etc. with the longer antioxidant activity for coffee, followed by the cocoa, green tea, black tea, and herbal tea.
If you want to improve the sleep and not to interfere with the endogenous melatonin, just do not drink them after 3 pm...they all contain caffeine, it is found in many plants, including coffee beans, tea leaves, cacao pods, and kola. You need about 6 hours to wash them out of the system.

[Couchpotato1999]

Jack, you are doing great esp. in physical activity! But what is the rationale for giving up the coffee? Coffee, tea and chocolate - they all contain very valuable polyphenols - such as catechins and chlorogenic acid etc. with the longer antioxidant activity for coffee, followed by the cocoa, green tea, black tea, and herbal tea.
If you want to improve the sleep and not to interfere with the endogenous melatonin, just do not drink them after 3 pm...they all contain caffeine, it is found in many plants, including coffee beans, tea leaves, cacao pods, and kola. You need about 6 hours to wash them out of the system.

Because my mother read some article on the internet linking coffee to higher prevalence of lung cancer, so she kept bugging me about it and then I gave in lol. Plus I was drinking a little bit too much coffee (because I always like to take things to the max), so I was drinking a 32 ounce coffee every morning, became too caffeine tolerant.

But now I'm getting used to drinking green tea, so I drink 2 large mugs of green tea a day. But I'm probably gonna start drinking black tea or coffee if I ever start taking Sunitinib, because I understand green tea is one of the contraindications.