Nhi from NY - Dx June 2016

[ntran727]

Thanks Bonni for the kind words and well wishes as always. Olga- yes I am very aware of the steroids side effects as my counsel my patients lol good think I do not have any anxiety or underlying psychiatric issues as it could really exacerbate that. I did see the blurred vision as a side effect but in this case it was confirmed to be uveitis and improved with steroids so we know it’s from the immunotherapy or inflammation in general. So far I feel okay mood wise and appetite is okay. I could use some weight gain since I haven’t been able to eat as much. I am still trying to stick to a somewhat healthy diet and maintain fluid hydration.

Yesterday, I had to increase the prednisone from 60mg to 80mg because of my super swollen joints in my hands, joint pain and muscle pain everywhere else limiting my activities very much to the point I can’t even lift anything or open a bottle. I emailed my oncologist and he agreed I should take the extra 20mg and see what happens. I didn’t have fever over night I and felt so much better in terms of pain this morning. Seems like I need to add rheumatoid toxicity to the list of immunotherapy side effects.

[ntran727]

Had CT chest abdomen and pelvis today with contrast. Lung tumors are stable and a few shrinking. Manubrium bone met now healing (sclerotic instead of lytic) Same with my L4 - healing. The radiologist didn’t mention any other spots so I called and waiting to hear back from him re: right iliac and L5/S1 Mets. It’s took soon to scan my head again but I do feel a slight headache where the new bone Mets are, wonder if that means it’s working there now. This is very promising as the scans are so early. My oncologist wants quick taper down from prednisone within 1-2 weeks, resume the Votrient when my LFTs are back to normal as we are not sure which one is working. I think both! I am down to 50mg of prednisone now and feeling well. Thank God for this very much needed news.

[D.ap]

Hi Nhi

Been reading thru your post and it sounds like wonderful news .
So my understanding is:
The toxicity was thought to be the Keytruda .
At this time you are not scheduling it back in as you wean yourself off the prednisone to see what MAY be still reacting to the said toxicity . Side affects ?

Is the votrient being introduced back first to see how your liver responds ?

Good to hear you all are waiting until your LFTS and consequently your body is ready to help in your recovery .


So it may show that the Keytruda was the culprit to the toxicity or maybe added the push to , what maynot of become toxic?
You had radiation , pazopanib and zometa and Keytruda .

The report of shrinkage is always a welcome report. : )
Sharing in your excitement of great strides !

It is truly good to hear from you.
Love,

[ntran727]

Yes the toxicity was thought to be from keytruda. Interestingly enough, as I was tapering down on prednisone I began to experience headaches on the right side (very focal) where my skull tumors are. 5 days ago I lost motor function to the right side of my tongue as I have a bone met at the base of my skull which has extended into the hypoglossal nerve canal. My oncologist was concerned and had me repeat MRI brain with contrast Monday. Results were stable thank goodness so they think it’s more prominent because of the quick decrease in prednisone. I also started back on Votrient 3 days ago as my LFTs were back to normal. First day I took it I was down to 10mg of prednisone and spiked a fever again overnight. Thought I was going back to the hospital, but after I increased prednisone I felt much better and was able to continue Votrient the last 2 days without issue. I do feel more itchy with a small rash coming back though. I meet with the neurosurgeon tomorrow and will see a rad onc who specializes in gamma knife. I think their plan is to do gamma knife to the base of the skull lesion once the immunotherapy is a bit out of my system. Ah it never ends. I hope the swelling is temporary from the immunotherapy working.

[Olga]

May be you are having an allergic reaction to pazopanib not to K? based on the rash this time

[ntran727]

It’s very strange because I definitely felt a difference starting back on Votrient especially with that fever that occurred the first day I took it. It’s hard to say because again I tapered down on the prednisone too quickly which may have caused the symptoms to resurface. My feeling though is that the Votrient is doing something, maybe augmenting the immunotherapy or added toxicity? My oncologist wants me to stay on Votrient as he’s not sure which medication worked and we don’t want the tumors to grow again while only the immunotherapy is in my system. I also took Votrient for 2 months without any reactions. All this started happening right after the SBRT and infusions. It’s all so confusing and such a mystery. I’m trying recover but there’s been a lot more bad days thank good days.

[Olga]

I remember seeing something about interaction of TKI and SBRT with added toxicity, need to look into. I would rather see you back on K after the steroids end. Even if at the reduced dose. We had a very good results with the half dose of it.

[D.ap]

Olga
Is this it? Your article of combined toxiety?

https://www.cureasps.org/forum/viewtopi ... hilit=SBRT

[D.ap]

I remember seeing something about interaction of TKI and SBRT with added toxicity, need to look into. I would rather see you back on K after the steroids end. Even if at the reduced dose. We had a very good results with the half dose of it.

Hello Nhi,
I'm sure sorry to hear of more bad days than good :/ Coming off steroids is truly a with drawl experience and I hope you feel better soon.

What day is this from your zometa infusion? It was performed the day of your SBRT ?
Its also a known to elicit a cytokine toxic release possibly and produce fever that when combined with SBRT can enhance that release, is that right? Lowering calcium levels?
How often are your calcium levels checked and are you still on oral calcium supplements and vit D?

Cytokine toxic release Is also ,in my limited understanding ,being referenced to the immunotherapies plus tkis plus SBRT ,of the article that Olga posted back in June.

[ntran727]

I had SBRT 3 days in a row followed by the infusion with keytruda and zometa the day after the last SBRT treatment. My calcium levels are still low and I am supplementing with calcium-vitamin D daily. That article Olga posted sure sounds like me. I probably had a high tumor load which made the response more intense, plus headache and tongue dysfunction from swelling in the skull lesions. The TKI likely is enhancing the effects of immunotherapy also, thereby causing more symptoms when I started it back 3 days ago.

[D.ap]

Hello Nhi
Could your numbness be as a result of your low calcium ?
And or your calcium supplement and diet issues ?

Or is it evident by the mri there is pressure from the one of the tumors in your head area ?


Parathyroid issues have been eliminated ie low calcium ?
Let me know if too many questions
Love

[ntran727]

Hi Deb,

I don’t think it’s the low calcium since I haven’t felt those muscle cramps and the spasticity since I supplemented. The calcium level is also around 8.7 which is not bad. I don’t have numbness, but actual motor dysfunction of the right side of my tongue that’s caused by one of the tumors in my hypoglossal nerve canal (12th cranial nerve which innervates the motor function of the tongue). According to the neurologist and neurosurgeon, they said it is in the exact spot to cause my isolated symptom. Repeat MRI was stable and didn’t show more inflammation, so I’m guessing it’s just swelling from the immunotherapy and coming off the steroids. I spoke with my oncologist and we decided to hold Votrient again until I’m able to taper off the steroids and get my gamma knife treatment. I am not feeling well on Votrient and had to up my steroids again as some of the rash and that fever came back the other day. Plus this will give us an idea if the immunotherapy is working by itself so I don’t have to go back on a TKI at all hopefully.

[D.ap]

Nhi
Thank you for the explanation .
As Olga has said and I feel is the right path , continuing if possible with pembro eventually , when it’s safer ie no hives and or tumors have subsided inflammation wise would be a better regiment . Also to gage true response from immunotherapy .

It’s truly less taxing on a person’s body to use immunotherapy verses targeted Tki . :)
How big are the cranial tumors ?

Ie no spastics issues . Can steriods hide that symtom? Suppress ? Not taking potassium ?
I know steroids can deplete potassium .

Respond when good for you .

All my love and hugs

[Bonni Hess]

Dear Nih, I am so sorry for your continued suffering, and am xery Hopeful that the cause of your returning and increasing negative symptoms can be found. Based on Brittany's experience 14 years,ago of trying to wean off of her 5 months of high dose Decadron used to help control severe brain met swelling, I know FAR too well how extremely difficult the weaning off of steroids can be. It has to be done very slowly and gradually, and in Brittany's case it took a couple of months for her to be able to completely discontinue taking them. Steroids are an evil necessity to help control swelling, but once they are started, they don't like to let go!! :( I am holding you very close in my heart and holding very tight to Hope that some good answers and a resolution can be found, and that the Keytruda will prove to be very successful in stabilizing progression of your relentless disease and shrinking/destroying your multiple symptomatic mets. Take care and continue to be strong in your very courageous battle against this monstrous disease. Heart to heart with special caring thoughts, healing wishes, and continued Hope, Bonni

[D.ap]

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

Nhi were you able to ever get a test on the interleukin-6 values ?
Was reading on osteoblasts cytokines release after radiation treatments to bones . I guess a simple ultrasound can cause osteoblasts dishevel .

Hope you are feeling better today.
Love ,