Nhi from NY - Dx June 2016

[Olga]

Sounds like a good plan but do not forget that you also should make a conscious effort to stay healthy in order to maintain the immune system functioning and not exhausted. To much inflammation and tissue damage might be counterproductive too.

[ntran727]

Yes, I am very focused on a healthy diet and exercise to keep my body and immune system as functional as possible. I have not been exercising due to limited time having newborn twins and the back pain, but plan to start back up again next week after we move out of our house. My diet has been very healthy though, mostly fruits, veggies, whole grains, nuts, beans etc. I only eat organic chicken and wild caught fish, no other meats. Hopefully I can maintain this while on the TKI since it was very rough on my stomach before. That’s why I want to eventually get off the TKI as I feel that it is a lot more harmful to the body than immunotherapy is (for now until we know more about the long term side effects of immunotherapy).

[ntran727]

So I received a call from Dr. Choi’s office today. The final plan is to do 10*3 starting on 6/18 for 3 consecutive days, so 6/18, 6/19, and 6/20. My infusion is on 6/21. It would be difficult to start on my infusion day as it is a Friday and they only give treatments M-F. I think this sounds like a reasonable plan. What does everyone think in regards to the timing and the dosage?

[Olga]

It looks ok, the optimal schedule for the immunostimulation is unknown anyways. The overall dose is going to be 30 Gy. The bone met is going to be def. dead after that. Just be careful not to break it after the treatment for awhile, till it heals.
Ivan's radiologist did not respond to me e-mail, and I have no idea why - he might be on vacation etc. In any case, he did not have any evidence based ideas re. better schedule as well, he just went with what we proposed plus the recommended dose for the sarcoma mets radiosurgery treatment with the curative intent - which is about 30 Gy as I remember.

[D.ap]

Hello Nhi
I hope today finds your back in much less pain.: )

I don’t know how you like reading all these medical papers on your down time ( like a new mom has this luxury), but just in case I’ll link you to a recent post of mine on Immunity , inflammation and Cancer .

It’s a 35 page read written by the UCSD pharmacology and pathology and Co authored by the Munich Germany Technical University .
It’s quite informative on inflammatory responses during tumor progression ( tumor promoting ,Immunosuppression ) as well as inflammation during immune response (anti-tumor immunity, immunosupportive ) info.

I found it quite fascinating to read and it does give links to studies with radiation and responses molecularly , seen with bloodwork results.

https://www.cureasps.org/forum/viewtopi ... 731#p13713

[ntran727]

Hi Debbie,

You are right on about me not having any time whatsoever to read anything.

The past few weeks have been pretty rough on me since I resumed the Sutent and developed horrible hand and foot syndrome. Probably didn't help that we sold our house and moved half the stuff to a 1bdrm apartment and the other half to storage so we can move to California this September. I was on Sutent for about 2 weeks before Votrient came in the mail and have been taking the Votrient for the past 2 weeks. The hand and foot syndrome definitely improved, however I have many side effects now that I am not sure is from what.

I completed 3 rounds of SBRT 10 greys *3 days (Tues, Wed, Thurs) which mainly caused a lot of fatigue and nausea/diarrhea. Then after I received the Zometa and Keytruda infusion yesterday, I had some pretty major side effects. I was in bed for about 24 hours after, unable to get up, muscles/joints and body aches everywhere, headache, sweats, chills, extreme fatigue, nausea, cramping. I finally got up to shower this morning and felt a little bit better but still feels like I got hit by a truck. I went to urgent care and got labs done just in case. Results are not back yet but hopefully my liver/kidneys are okay. I know my thyroid levels are starting to be abnormal again since discontinuation of synthroid 2 months ago. Must be the TKI.

I truly hope that this means keytruda is working and it's just being compounded by the radiation and I sure hope that I am able to recover quickly. My next scans are on 7/10 before my next keytruda infusion.

[Olga]

Nhi, as I remember the muscles/joints and body aches are the known side effects of Zometa but the rest look like the flu-like Keytruda reaction - a cytokine storm increased by the SBRT. Which was the point. And there might be Zometa-Keytruda interaction, I tough about it when you said that you were going to have it - that we do not know how they react, they both are pretty strong drugs plus pazopanib.
Surprisingly, they expect that zometa would increase the K efficacy
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6009040/

[D.ap]

Nhi
My love and hope that you are continuing to feel better .
Love

[ntran727]

So my results showed normal liver and kidney function but I had hypocalcemia (8.4, baseline 9.5). That explained the muscle spasms and weakness. The CBC clotted and didn’t result which was not helpful. Urine was clear. I emailed my doctor, told him the results and he advised me to supplement with calcium/vit D. I took 2000 units (1000 BID) yesterday and 1000 today. Muscle cramps/pain improved, but I still had a splitting headache and teeth pain that came whenever I felt hot. I took ibuprofen last night and woke up drenched in sweat. I felt like a million bucks this morning until around noon when I started getting chills and fatigue again followed by fever of 101.7 an hour later. Headache came back, took Tylenol 500mg and laid down. Fever broke after 2 hours. I emailed my doc again, they wanted me to come in. I went and had labs done w/WBC of 1.7 and ANC 1000. They admitted me to the hospital for neutropenic fever as it has been going on for 4 days now and fevers are getting more frequent. They are going to start Zosyn. I know antibiotics are no good but in this situation I’m not sure what I’m dealing with so I have to take the Abx or be at risk for a pretty severe life threatening situation. Will update you all with what’s going on.

[D.ap]

Nhi
Thoughts and prayers and love to you.

Being with the hospital is where there can be the best investigative work performed.
You take care of you .
All our hearts and prayers , as all get to the bottom of this .

Love

[Olga]

cytokine release syndrome?
ask them to check the interleukin-6, there is a treatment for that
Severe cytokine release syndrome in a patient receiving PD-1-directed therapy.
https://www.ncbi.nlm.nih.gov/pubmed/28544595

[Olga]

I posted some additional info and attached the full text of the above mentioned article here:
viewtopic.php?f=90&t=1735

[ntran727]

Thank you Olga. I brought this up to my oncologist. I have been on 24 hours of Zosyn and told them I don’t want to take it because I don’t believe the fever is from an infection. My oncologist wants to start me on prednisone which sucks because it’s such a set back, but the fevers are only getting worse. I had a fever of 103 that didn’t break for 5 hours and I felt like I almost died. They had to give me 2L bolus. We held the pazopanib so WBC count came up a little 1.7 -> 2.1 and ANC 1200 to 1230, again leading me to think it’s not neutropenic fever. My kidneys are still okay but LFTs are in the 180s when they were normal 3 days ago in the 20s. Not sure where that is coming from and if that’s what’s making me feel a lot worse. I’m going to discontinue the antibiotics and don’t wanna take prednisone but it seems like that’s the only thing I can do to treat this as it is getting more severe. What do you think?

[Olga]

In an article they say the C-reactive protein can be used as a surrogate marker for IL-6 in CRS, i.e. if it is very elevated it might be it. Can they try a IL-6 inhibitor tocilizumab? I am not even sure if this is a readily available drug or what. It is not used after the steroids are failed but may be they could agree to give it a try right away? in this article half of the patients improved after the single dose:
https://www.ncbi.nlm.nih.gov/pubmed/29207939
or it is going to be the same immune suppressive as steroids? It is above my immune system understanding, need to consult the immunologist
they say it is a better alternative from the immune checkpoint interaction here:
https://www.ncbi.nlm.nih.gov/pubmed/28830882
https://www.ncbi.nlm.nih.gov/pubmed/30587227

[ntran727]

Actually I just spoke with my oncologist. They are worried about autoimmune hepatitis and that’s why the prednisone is given, 50mg/day. They said it could get worse quickly and we have to address it. They want me on ABx also until the blood cultures are negative for at least 24 hours, so 1 more day and stop to be sure. I’m getting a liver ultrasound done soon. As far as CRS, I don’t have any other CRS symptoms besides the fever and that drug is likely not readily available here. They don’t think I am severe enough for CRS symptoms wise and prednisone would be given anyway in that case. So let’s hope I start to feel better because this is the worse ever.