arojussi wrote:That moment when it is 5.00 am and you just found out that nothing is wrong with your hormones. It is just that your internal clock is so messed up that your cortisol cant be accurately measured in 10.00. I saw the doctor Friday and he didnt want to give me keytruda, because of low cortisol 50 nmol/l. Actually to my circadian rhythm that is normal value and any higher would indicate cushing. We had new blood test and I hope that will be enough to convince doctor to give me my 7th dose. Worst case: he want so wait for brain mri to rule out keytruda side effect, but that would be crazy.
One good thing: My new doctor doesnt think I am crazy for considering surgery. Actually he was recommending it. Now we just have to find a surgeon.
Great news
You both know the drill
Find the most experienced surgeon
Thyroid issues ?
Have you taken any beta blockers ?
No. I had no new symptoms. I am still sensitive to cold as always, but during last 3 weeks my condition was completely stable. My blood pressure wasnt low. My thyroid hormones were also normal.No beta blockers. I am 99 % certain it is just my circadian rhythm.
Did you have such a low cortisol findings in the past (documented)?
They probably suspect that you have a hypophysitis and a low cortisol as a consequence of the low ACTH - it is a known side effect of ICI drugs but I guess your ACTH is normal?
I found that low cortisol levels could also occur due to ACTH deficiency after cranial irradiation - was the pituitary gland in the proximity to irradiated radiosurgery targets, also occur commonly after the discontinuation of glucocorticoids, also low adrenal function cases were found with sunitinib - what about pazopanib, could that be the case as well? Need to investigate. Keytruda might be not the reason. Also ask them to have an MRI of the adrenal glands to rule out adrenal met.
When you talked of your BP, has it routinely been on the low side but this last time was in a normal
realm? What's your bp/ O2 run ? HR?
We are 106/60, 98-100,70
Your not on steroids at this time ,right? When did you last use them and did you have to stop them abruptly?
I agree with your circadian theory. I assume there were 2 different blood works drawn at different times ?
Just pazopanib and Keytruda
I found this forum on Keytruda and melanoma patience with brain tumors and their accountance of experiences.
What blood test are you waiting on to make the final move back to Keytruda
I sure agree with Olga for a scan of the adrenal gland and investigation of the pazo. Josh became low thyroid while on sutent .
You are using the pazo for edema ? Headaches ?
So my cortisol was normal, when. It was tested in 6:00 PM. It is kind of embarassing for 25 years old to mess his internal clock this badly, but when I dont have to go to work I cant get myself up in the morning or even in the afternoon. I got seventh keytruda today. I am very happy with my doctor. I will have brain scan in next monday. We will see the effect of lower dose of pazo. I have been on pazo for 6 months now, so it might not even work anymore and tumors could shrink just because of keytruda. My blood pressure is usually around 120/80 heart rate: 80 and I quess my oxycen levels are closer to 100.
I am just going to think out loud in the text paragraph so dont take it too seriously and feel free to comment.
As far as I know tki can help to get t-cells into tumors by messing with tumors micro environment then keytruda can activate t-cells, so it is important to use tki in the start or better yet even before using pd1-inhibitor. However maybe tki doesnt need to be used after t-cells are in tumors. There is no clinical data about this and even mouse models are open to interpretation. Maybe I am just trying to convinge myself that lower dose of pazo hasent stop tumors from shrinking.
Truly happy to hear of your low cortisol returning to normal and you being able to have your dose of Keytruda.
Looking forward to news of MRI next week.
Tumors keep getting smaller. Looks like 400 mg of pazo is enough to keep keytruda effective. Last summer I was certain, that I would be dead at this point.
Such wonderful, wonderful news! Brain too?
I certainly understand the feeling of occasional hopelessness.
But we are here anytime for support
Keep the faith!
It was just brain mri. They say: ALL tumors shrank, so I quess this means that 7 tumors that werent radiated also turned smaller. They dont mention how much they shrank, so it is most likely just 1 - 2 mm, but as long as tumors dont grow they might be dead or dying and it just takes time for immune system to finish the job.
Also Cleveland answered if 2 biggest tumors start grow I might be candidate for LITT. One big tumor( 19 mm in cerebellum) can be treated with surgery, so I might need litt for only biggest tumor. That tumor is in the area were they remove hemangiomas all the time, so I believe even that tumor can be resected wit surgery. After surgeries I think I should radiate 7 small tumors and have close monitoring of my brain, because new tumors can easily be treated with stereotactic radiation as long as they are found small (less than 10 mm would be ideal I quess). Stereotactic radiation should be as effective as surgery for small mets. This is difficult and expensive, but I see no reason why it couldnt be done. I will most likely want to gontinue keytruda for the rest of my life, because side effect are very mild and risk of new growth after stopping is relatively high.
Private hospital refused from doing second round of stereotactic radiosurgery for remaining 7 untreated tumors and 2 biggest ones. For biggest ones it would be second round. Tumor in my cerebellum is now less then 1.5 cm in diameter so I tough this was the perfect window to radiate it again. There is veil aound tumors possibly radiation necrosis so even the biggest tumors might be dead, but I dont think it is likely. We haven't found any surgeon willing to operate and even then surgeon most likely wants to wait until tumors grow again. Then tumors might grow quickly and even smaller tumors might grow because of nutrients and growth signals from bigger ones. The reason they refuse from radiating is because I might life years, so they want to avoid damage from radiation. Personally I think risk of tumors growing out of control is much more dangerous. So lets just hope we notice growth in brain tumors before it is too late. I have brain mri every 2 moths. I really feel hopeless because of this.
Dear Jussi,
I am so sorry for the obstacles and resistance that you have encountered for treating your multiple brain mets, but perhaps it will just require time for the Keytruda/Pazopanib to be successful in completely destroying your brain mets, and it is best to postpone any further radiation treatment until it can be determined if the brain mets are shrinking/disappearing. I know that there is a valid concern and risk of brain damage and serious side effects from too much brain radiation such as the severe and permanent short term memory loss caused by Whole Brain Radiation (WBR) , but it seems that the largest and most concerning brain mets could/should be treated with a specifically targeted radiation treatment such as Gamma Knife if it is determined that they are continuing to grow. Are your brain mets symptomatic with headaches, nausea, vomiting, vision disturbances, extremity numbness, or loss of balance, etc? Hopefully your Keytruda/Pazopanib treatment will begin to be effective in shrinking/destroying all of your multiple brain mets as thankfully has happened as a result of our CureASPS Board member Josh's Opdivo treatment based on his mom Debbie's today's very encouraging update. Please stay strong, pro-active, try to be patient (although I know that is very difficult), and don't lose Hope dear Jussi. If the Keytruda/Pazopanib treatment is ultimately unsuccessful, there are very thankfully and encouragingly now other promising new treatments available for you to explore and pursue. Take care and keep in touch as you are able.
With special hugs, deepest caring, healing wishes, and continued Hope,
Bonni
Last edited by Bonni Hess on Fri Jan 27, 2017 2:40 pm, edited 8 times in total.
Jussi - please do not feel hopeless or desperate. There is some logic in what they say - you really need to have the Keytruda without the radiosurgery now to see if it could eliminate the brain mets by itself. Otherwise there is no way to tell what is working. What if the Keytruda+pazopanib regimen you are on now is working by itself - read the Josh update with Opdivo when the radiosurgery untreated brain mets seem to be resolving with Opdivo - the same class of drug as Keytruda. There is a big risk - I understand, my be try to negotiate the more frequent brain MRI?
