Nhi from NY - Dx June 2016

[D.ap]

Nhi,

Glad they are looking into your liver enzyme increases.
It seems like a very good idea to be proactive with the prednisone .
Was reading on autoimmune issues of the liver earlier.

Hoping to hear of you feeling better soon .

Is the pharmacist been included on your consulting board with this issue ,to make sure the meds aren’t conflicting somehow and causing a toxicity in your liver ?
Even though , I guess you’ve been administered them by now( zometa) and or have discontinued them ( it ,the pazopanib ).

https://www.karger.com/Article/FullText/479314

The autoimmune thought should ALWAYS be looked at as we are bumping up the immune response, that has been suppressed .
Watch your thyroid levels as best you can as well.
The parathyroid as well as the primary thyroid. Inflammation /scans etc can give you a base line now, in addition to your liver ultrascan?

[ntran727]

In regards to the drug combinations causing liver toxicity, it would’ve already been elevated since I had been in the TKI for almost a month, pazo specifically for 2 weeks in conjunction with keytruda. We checked LFTs a week after starting back on the TKI and it was normal. I checked them on Saturday (day after my infusion when I got very sick), and they were normal. Then it went up slightly yesterday when I got admitted to the hospital, we held pazopanib and then it tripled in value so they didn’t think it was drug toxicity and more worried about autoimmune hepatitis. Other surprise is that my stool came back positive for C. Diff! How? I don’t know, I wasn’t even having diarrhea really, only a little bit after radiation. C.Diff is usually an infection you get from antibiotic use so I’m wondering if it could happen that quickly after they gave me Zosyn. But I also read it can be caused by radiation and chemotherapy drugs. All very perplexing as one of the symptoms is fever also. I don’t know what’s making me feel better, but I think the prednisone did. My headache and nausea is completely gone, I was able to get up and shower and have been feeling the best I’ve felt in days/weeks! I hope it lasts and hope the labs come back better tomorrow so I can go home!

[Olga]

C.Diff might actually come up as an opportunistic infection from the suppressed state after the prevailing normal gut flora was hurt by the radiation - C. diff spores lie dormant inside the colon until there is no balance to them so they grow. Does it make sense to you? or you also could have caught it at the hospital while planning the radiation.
What antibiotic are you taking (it is sensitive to metronidazole, or vancomycin, or fidaxomicin)
You might want to start taking probiotics at least some

When the culture was taken? there is an article that says that you can get an intestinal infection, like C. diff, from treating a different illness with antibiotics so basically if it was taken after they started antibiotics, and given very low WBC, they might have actually caused it to wake up
https://www.health.harvard.edu/staying- ... n-the-rise

[D.ap]

Morning Nhi,

I hope today finds you continuing to feel better.
Have you ever had issues with too much Iron? Did the bloodwork/urinalysis , include testing for iron levels?
Hope you get good news and are able to head home soon.

[Bonni Hess]

Dear Nhi, I am so very sorry about all that you are going through with the recent concerning symptoms and complications that you have developed. I have not posted recently as I have no personal experience with any of the new Immune Checkpoint Inhibitors, and consequently no anecdotal or knowledge based advice to share. I am, as always, deeply grateful for the very knowledgeable and well researched shared information from Olga, Debbie, and other contributing members on this Board. Although I have no specific information, I am wondering if you are experiencing drug toxicity from too many medications with the Pazopanib, Keytruda, and Zometa regimen ? I Hope that your infection and fever are now resolving, that you are feeling much better, and that you have been discharged from the hospital to return Home to recover and rest (as much as you can with two young babies!!) Take care and keep in touch ad you are able. Reaching out to embrace you with gentle hugs, healing wishes, special concern and caring thoughts, and continued Hope, Bonni

[ntran727]

Olga, I read all that too so maybe it happened after the radiation even though she told me there was almost no bowels in the field and she didn’t expect me to have diarrhea. However the diarrhea was brief and only lasted for 2 days. I only had one stool sample watery enough for them to take and that one resulted in positive C. Diff. Strangely enough, I have zero symptoms of it, no gas, pain, bloating or diarrhea. This morning was the first bowel movement I had in 2 days and it was completely normal, borderline constipated. I’m on vancomycin.

Lab results this morning were much better for the CBC. White count is now 2.7 and ANC 2000. So I didn’t have neutropenic fever and it was likely the pazopanib in combo with radiation and keytruda. Calcium dropped to the 7’s so they are giving me IV calcium as my muscle cramps were coming back. Liver enzymes went up to 182/300s from yesterday, rash got worse and more diffuse over my face, arms, neck which was not swollen or itchy so it didn’t seem allergic but just a progression of the immunotherapy rash I had from the start. Other problem is I woke up with blurred vision. It was creeping up some, but much worse today. I had an MRI brain w/contrast, brain completely normal but I have 2 new bone Mets one at the base of the skull (pretty small don’t know exact size as no report yet) and one on the calvarium which is larger, neither of which would lead to vision loss according to the neurologist. He suggested a spinal tap to rule out meningitis, and I said no because really it’s unnecessary if I don’t have other symptoms of meningitis. They’re going to transfer me to the main hospital as they don’t have an ophthalmologist or hepatologist here. They increased my steroids to 1.5mg/kg from 1mg/kg yesterday and I feel much better in regards to the severity of the fevers since the steroids. I think we are dealing with immunotherapy side effects and hopefully this means I’ll have good response to it, but worried if I’m able to continue it. We will see and I’ll keep you all updated.

[ntran727]

I’ll start with.. I’m getting discharged from the hospital today!

It’s been a hellish 5 days of pain and suffering, but after 3 days of prednisone, I’ve been an overall very speedy recovery and good response. So in the end, it seems like most of the symptoms I had were from pembro toxicity minus the hypocalcemia.

I developed uveitis with 1 day of blurred vision which scared me the most. Good thing when I saw the ophthalmologist the next day, my vision was already back and he said it was mild and I should continue on steroids. He didn’t think I even needed steroid eyedrops.

My rash has spread from my entire trunk and extremities to my face and legs. It’s slowly fading starting from the face down to the chest and abdomen and last to fade will be arms and legs according to the dermatologist. They said it should resolve within 7-10 days.

The hepatotoxicity improved on the 100mg of steroids. I got in total 50mg prednisone Tues, 50mg prednisone w/50mg solumedrol on Wed, and 50mg solumedrol BID yesterday. LFTs improved to now 58/95. They are likely going to taper me down within a month as I have grade 3 toxicity.

I am so thankful to get better and to respond to the prednisone. It was good it was started early to avoid any further damages to my organs.

[D.ap]

Nhi,

Good news of your discharge! : )
Take care of yourself and let us know how you are doing.
How are your BP and HR, doing thru all this?

Love

[ntran727]

BP and HR were normal the whole time with exception of the HR going up slightly with fever.

[Olga]

Good to hear Nhi that you are going home, I hope that you have help there.
Have you ever been on steroids before?

[ntran727]

Thanks Olga, yes we have help at home with my in laws who have been here a lot. My mom and brother flew in but will be going back to California soon. I have never been on steroids before. It doesn’t seem all so bad besides the swelling. But honestly I can’t make out which side effect is related to what anymore since they all blend in. Let’s just hope the Keytruda is doing it’s thing. I found a few articles that link fevers and uveitis to better response rates to the immunotherapy. I’m hanging in there and hopeful I have a fighting chance.

[Bonni Hess]

Dear NIH, I am so grateful that you are feeling/doing better and have been able to be discharged from the hospital to rest and recover in the comfort of your own Home, and that you are receiving help from family so that you can rest. Was a definitive cause of your fever and other symptoms determined so that the prednisone is not just masking the root of the problem? Given the concerns about possible drug toxicity as the cause, will you be resuming the Keytruda/Pazopanib/Zometa treatment regimen? I am so sorry about the finding of two new bone mets, but am Hopeful that the Keytruda will destroy them or another treatment will be used once you have recovered and regained your strength enough to continue your treatments and courageous three year battle against your increasing challenges with this insidious disease. In the meantime, take care, rest, and enjoy special mommy time together with your two precious little miracle babies. With gentle hugs, special caring thoughts, healing wishes, and continued Hope, Bonni

[ntran727]

Hi Bomi,

There are very specific protocols with how to treat toxicities from these new immunotherapy drugs. Olga sent me a 30 page manual with the common toxicities which are all autoimmune related because the immunotherapy takes the brake off these immune cells, so it could happen anytime during treatment. Depending on the grade and what type of toxicity they need to add prednisone and sometimes an immuno-modulator to treat it. Hepatotoxicity and skin toxicity are 2 of the things that won’t permanently take me off the Med as opposed to colitis or pneumonitis, but even then it depends on the grade and severity. My oncologist just emailed me and wants to see me Tuesday so we will discuss the plan going forward.

[Bonni Hess]

Thank you for somehow finding the time and energy to share the additional information dear Nih. I am very grateful that you are so well researched and knowledgeable which is so critically important in this difficult battle. I Hope that everything goes well with your appointment with your 0ncpgist on Tuesday, and I will be anxious to hear his treatment plan recommendations when your busy schedule allows you to update. More gentle hugs, healing wishes, and continued Hope, Bonni

[Olga]

Nhi,
I too am very hopeful that the side effects you are having are immune related - at least they very much look like that.
Re. steroids - they tend to have a very strong effect on the mood swings after awhile, so you would need to educate yourself and especially you family so they know if you are bossy and irritated and eat a lot - it is not you, its steroids:)
some reading:
https://www.mdedge.com/psychiatry/artic ... redictable
blurred vision can also be a side effect of steroids.