Trice Dx November 2020

[gtrice]

Hello Trice,

Good to hear from you.😊
So you are hyperthyroid ?
What treatment are you using for your hyperthyroid ?
Or are you fluctuating from being hyper and hypo thyroid ?

Also with your weight gain , you’ve been given council on what to watch for being and to report back to the doctors in the advent you gain an inordinate amount of weight ? Ie kidney issues ?

Hi Debbie, I am now hypothyroid and will be taking thyroid replacement for the foreseeable future. The kidney specialist & primary oncologist don't seem super concerned with my kidney levels yet. It is hovering higher than normal so they are keeping an eye on it. They've frequently mentioned that my size (6'5 280 lbs) and race (African American) could contribute to slightly higher creatine & EGFR levels.

[gtrice]

Hello! I hope everyone is doing well. Some positive news from my oncologist - It appears I have had a complete response in my lungs. In my latest set of scans the radiologist couldn't find any more tumors on the CT scan.

My primary tumor has been stable at about 2x3 cm and I have been referred to an orthopedic surgeon to move forward with removing it.

One thing I am still trying to figure out is what's going on in my bones. A few months back a sclerotic legion appeared on my iliac bone and has stayed stable for the past few scans. My doctor commented that it appears to be a met that is now resolved by the immunotherapy.

Is that interpretation consistent with your doctors asses bone mets? Its hard not being able to know exactly what it is (healed vs "active" cancer vs benign bone lesion)

Thank you all for your advice & responses over the past couple months! It is much appreciated :)

Trice

[Olga]

Hi Trice,
thank you for the update. This is a very good news for you, indeed.
If the MRI scan with the contrast of the sclerotic bone area was done, it is usually able to show with the certainty that there is no contrast accumulation. The problem is that if there was a met and now it is healing, there is still might be some inflammation related accumulation, and also doctors might be aware that smaller ASPS mets are metabolically low active comp. to other cancers. So they will be able to say in few months with more certainty what this one is. If this is the dead met resolving, it will get smaller or totally dead calcified.

[D.ap]

Hi Trice. 😊

Great news with the lung tumors being resolved !
You’ve been on Opdivo for 7 months ?

The yervoy was taken the first 3 months , then stopped
as per protocol ?

I was wondering how your creatine levels and kidney functions , and calcium levels are looking these days ?
Your BUN levels as well..

What dose of thyroid Med are you on?

So incredibly happy to hear your news of all the reduction .
Love,

[gtrice]

Hello everyone,

Happy New Year! I hope you all are doing well. I wanted to give the group an update.

Around October of 2021, I developed drug-induced lichenoid dermatitis - a rash/skin irritation on my entire body & inside my mouth as well from the immunotherapy. I was put on topical steroids - but it didn't help much. I'm still dealing with the remnants of rashes and a consistent case of mucositis. My January infusion was held so the dermatitis could calm down, so its been approx 3 months since I've received infusions.

Some much better news, after almost a year of immunotherapy (Yervoy & Opdivo) clearing my innumerable lung mets, my doctor took my case to tumor board and due to the reduction in size of my primary tumor they gave the OK to have it surgically removed.

On Feb 5 I had surgery to remove the tumor on my right shoulder blade area. In Dec 2020 it measured 7.8x5x7.6 cm - when it was removed it measured 4.2X4.0x1.6 cm. All of the tissue removed was determined to be dead/non-cancerous with negative margins around the mass. The tumor board considers me as having a complete response to the therapy.

With the results of the recent biopsy of the resected tumor showing no cancer cells and given my recent rash outbreaks, they have suggested I discontinue treatment all together and move forward with regular scans. They mentioned that normally they'd continue a bit longer for good measure, but they want to avoid further immunological side effects. I'm scheduled for a chest abdomen CT next week and assuming all goes well, I'll be on getting scans every 3 months.

All things considered this is amazing news and I'm extremely grateful for where I'm at in this journey, however, I do have a little anxiety of what the future may hold. I will continue to remain diligent have been considering speaking with doctors that can suggest meaningful maintenance practices and searching for information as well. Anything you all have to offer would also be greatly appreciated.

[Olga]

Hi,
thank you for an update. Acute immunological toxicities are signs of the overreacted immune system and usually when the patient on immunotherapy gets to this stage, his immune system is able to find and kill sarcoma cells all over the body. Ivan's immunotherapy was stopped 2 years ago by the same reason and he is still doing very well. You can use the special mouth swish for mouth lichenoid reactions, and topical steroids instead of the systemic steroids. We also found that lozenges with xylitol are very helpful as an additional treatment. Also be careful re. other possible places of the autoimmune attack as despite you stopping the immune checkpoints block, the immune system is still in its hyperactive state. I would suggest the blood work once a month to check for the kidneys/adrenals/liver/pancreas function as these are the organs that can be affected.
Other than that, you are having a huge success with the treatment, enjoy.

[D.ap]

Hi Trice
Excellent news on complete response with Opdivo and Yervoy!
Are your thyroid levels still low , or is the levothyroxine keeping them in check ?

Was the thyroid Med considered to be a possible culprit of the
lichenoid dermatitis?

https://www.authorea.com/doi/pdf/10.225 ... 7.72814224