MovingOn

Hi All and Hi Mike!
Things have been going ok for me. My scans every 3months show something which keeps them from extending the next scan to 6 months. I have some very large lymph nodes 11mmx17mm but they have maintained their healthy shape (kidney bean shape). They say this is fine and the lymph nodes are probably over-reacting to small things like allergies due to Opdivo or ?
I’m feeling lucky this Summer and hope you all have even better luck!

Hi,

considerasking your husband if he would like to take 1/2 a Benadryl before bed each night. I did this after yervoy and through Keytruda and Opdivo. Non oncologists used to diagnose me with allergies if I would go into urgent care while on Yervoy and later Keytruda. So my oncologist suggested I take a Benadryl each night. It turns out that 1/2 a Benadryl was enough to lighten my reaction to the immunotherapy and to keep me asleep all night. 

Live heard of other immunotherapy patients being given Benadryl in order to better Handle the infusion.

Just do what I did… panic on the way in. Write on your own chest, “I am mean after surgery.” Then when you wake up immediately say, “show me your tits” to anyone nearby. They will put you back to sleep and the next time you wake up you will be in a private room.

I only get scans up to the neck in terms of physician orders going to insurance, however my neck scans go all the way to the top of my head (I see them in my oncologist’s office). I’ve had melanoma in lymph nodes behind my ear so I make certain that my head is checked by the radiologists with each scan. Maybe your insurance declined the head CT because they know the neck CT will Include the head?

If your husband has ever been on immunotherapy then maybe consider prednisone to see if it has a positive impact on the optical issue within the brain. I haven’t experienced vasculitis but have felt the impact on the optical nerve (double vision and pain) of hypophysitis. I know your husband isn’t on immunotherapy currently but if he has ever been on it then maybe it did change his immune system for an extended period.

 

i hope it all clears up. I wouldn’t be able to handle ocular pain for 6 months till the next MRI. But I also can’t handle the opthamologist visits where they spin my eye to look at the far sides (ouch!).

Hi, you mention that you are spending a lot on travel. If you are going to LA frequently maybe there is a place near there where you could stay. I live in San Diego and your family would be more than welcome in our home for the time around treatments. We’re 2.5 hours drive from LA.

If you call your oncologists office and tell them about the symptoms they will certainly schedule a brain MRI quickly. Once a doctor knows about something they almost are required to do something about it. I had headaches last year and every time I mentioned them to my oncologist she ordered an MRI.

My scans last week showed a 6mm polygonal nodule in my lung. The scans 3 months early notes something very small in the same area (I don’t have the exact words from the scan in front of me). My Oncologist says not to worry about it and they will check it again in 3 months. I’ve gotten to the point where I don’t worry about anything under 1cm (and if it’s a lymph node I’m ok up to 2cm as long as it has the normal shape).

I’m not sure this is helpful but I’m just saying lung modules seem to come and go for everyone. So stay vigilant about it but also don’t let it worry you too much unless it becomes bigger.

I’ve been on Opdivo monthly for 6 months. I’ve had many infections during this time and my Onc prescribed two antibiotics at one point because my lymph nodes were swelling. So I would definitely recommend getting your throat checked out.  I think that I also had a soar throat (I can’t always tell because a neck dissection reduced the feeling I have in my neck) but that I took care of with strong mouthwash: 1/2 hydrogen peroxide & 1/2 listerine.

Do your hands tingle? Possibly when sleeping?

My thyroid is also impacted by Nivo. If I forget my levothyroxine pill for two days then my

hands start to tingle in a significant way.

Hi, can I ask how they found your primary in the ear canal?

I had melanoma in 4 lymph nodes in my neck (cervical nodes, I think that is zone 4) and one in my parotid. My primary has never been found. They say it most likely was on my scalp under hair and defeated by my immune system after it had spread. However, I’ve always wondered about ear canal and sinuses but I figured that anything there would show up on a PET scan or CT. Thanks!

I would second Lisa’s recommendation of acupuncture. I’ve gone through multiple occurances of nerve damage and recovery (except one). From what I’ve experienced of acupuncture, they go directly after the surface nerves which are associated to a deeper nerve pathway. Because your nerve issue is in the brain rather than in the local nerve itself maybe acupuncture won’t help, but they may still be able to prod your nerve signal back into existence by sending a stimulation back up to the brain via the particular nerve.