Update

jazzgirl

Well. I reported all clear in June but things change in the blink of an eye. On a completely unrelated scan, an enlarged lymph node was discovered. Not the results we were hoping for from my biopsy: Kidney cancer cells (diagnosis and surgery 9 years ago) have resurfaced. I had a CT scan of pelvis/abdomen tomorrow and a brain MRI yesterday and will see an oncologist on Tuesday the 12th (the day my wife and I were supposed to return home to Ireland.) I'm really hoping no further involvement shows up in those scans.

So. We still don’t know what my treatment will be until we see the oncologist, or where I would do treatment (Iowa or Ireland). We're taking a break this weekend to see our son and daughter-in-law, then back to clinical reality.

As always, I so appreciate all your messages, prayers, light, energy, support in all kinds of ways. And as with my first surgery, I ask that there be no militaristic, battle, fight, etc. language about it. I will live into and through this, loving my body as it is. Take care ~

stub1969

Tough news, Jazz

I think I can speak for the group; we're hoping, praying, sending positive thoughts, and energy your way as you embark on this new journey.

Keep us posted on the outcome of your meeting on Tuesday

Wishing you only the best!

Stub

Allochka

This is tough…

Dear Jazz, hold on! Fingers crossed that only lymphnode is affected, and the rest is clear.

And treatments work wonders these days!
Hugs,

Alla

jazzgirl

Thanks Everyone - we met with the oncologist and the preferred treatment seemed to be surgery to remove the lymph node, then a followup CT scan every three months, which would let me go home to Ireland. But they thought they saw a couple more places they want to investigate through an MRI today. So more information after that. I have a consultation with cardiothoracic surgeon on August 26th, then who knows how long until surgery. I'm in waiting mode for a while. Take care All ~

stub1969

That "waiting mode" is so tough, as you know, Jazz. We're here for you!

Stub

donna_lee

A year after the BIG surgery, an enlarging node was found, biopsied, removed; then back to every 3 months for CT's. Year 3, same routine, then a PET scan of my lower abdomen/pelvis. It was positive- and the third surgery. Those years 2006,7, & 8 made me feel a lot older than I was at that time.

1 and a half years ago, I got a letter from my Oncologist. He was retiring, and also, I didn't need be followed by oncology, just my regular doctors. I'm 82, refuse to act my age, still have my job, and manage my property by myself. (Husband died on 1/1/24-fell & hit his head on the concrete floor)

There is hope that a single lymphadenectomy, (or 2) will work. Hopefully, yours will succeed and you'll be smiling.

Good luck and hang in there.

Donna

Allochka

Yes to all Donna said! I was going to retell her story about dealing with it with surgery alone and now out of even oncology surveillance…. But it is sooo much better to hear from Donna herself.

Let's hope surgeries will keep you NED again.

And Donna, so sorry to hear about your husband :-(

jazzgirl

Thanks to all of you for our comments and personal journeys. They now want to biopsy my liver - not scheduled yet. I have consults Tuesday with a cardiothoracic surgeon (lymph node) and a radiation oncologist (I presume for the unbiopsied liver). We'll see where we go from there. Also will take advantage of a counseling program offered by the University. More later! Take care ~

donna_lee

Hey, that was part of the original surgery, as the cancer was stage 4 and had already spread to the left lobe of my liver. That was removed and numerous "just cysts" in the right lobe were biopsied. And the set of nodes behind the R. Kidney (2 of 11 were positive.) I was in OR for 11.5 hours. That's my excuse for Memory problems at times. :)

Hang in there.

More good news. My granddaughter is on the Oregon State VB team. She played a lot this past Saturday and they beat UO 3 sets to 1. Except my sitting muscles are tired. 3+ hours up, sit in no AC gym, 3+ hours back. It was worth the trip. Of course, my husband and I both graduated from Oregon State. !!

jazzgirl

It's been a long wait to get the liver biopsy - finally done late this week and unfortunately renal cell cancer showing up in the little (1.5 cm) spot there. So - sounds like no surgery on the lymph node, since it is now multi-site. Waiting for a plan after the various docs gather. And an aside to donna_lee - I looked up the OSU volleyball team and they are having a good year! Thanks eveyrone for hanging in here with me. Take care ~

stub1969

I've been waiting for news about the biopsy—-tough news to hear for sure. As you know, you've got some excellent doctors working with you. I'm hopeful you'll be able to return to Ireland and still receive this excellent care. Reach out if you need anything.

Prayers and blessings.

Stub

Allochka

Very sorry to hear… I remember that Smart Patients portal was recommended here for more challenging situations, perhaps you could check it as well.

Thinking of you,

Alla

Deanie0916

Jazzgirl hope you are getting direction and hope. Prayers for you as you move forward.

lobbyist0724

I am sorry to hear the news… sending prayers and best wishes.

Allochka

Hello Jazz, thinking of you ! When you feel up to it, please let us know if any further updates.

HUgs,

Alla

Allochka

jazzgirl

Hey sorry I have not kept you up to date. Let's see - we left off with one lymph node, tiny spot in liver, maybe another one. I came home to Ireland and had a scan for a bursitis hip that is keeping me from walking and … renal cancer cells showing up in pelvis, lumbar spine, and femur. So - we're going to Oregon for Thanksgiving while they sort out my treatment here. Early Dec I will have another scan and start either Ipilimumab (Yervoy) together with Nivolumab (Opdivo) OR Pembrolizumab (Keytruda) together with either Axitinib (Inlyta) or Lenvatinib (Lenvima). I'm purposely typing all these names out so when they start speaking about them in the next appointment I will be somewhat familiar with generic and brand names. Either option has side effects that affect other issues I already have, like kidney function! Docs here seem pretty positive, so I am going with their attitude. I promise to keep more up to date here and thanks all of you who have asked what's happening. Take care everyone ~

stub1969

I'm thankful for Allochka requesting a follow-up. And, I'm even more thankful that you gave us an update, Jazz. I (we) hold you close and hope/pray that you get a lasting result from the meds you're about to start. Equally important is I (we) hope/pray that your QoL is not affected.

I think of you often, Jazz!

Blessings for only the best.

Stub

Allochka

Thank you for taking time to update us. ****, this is not the update we were hoping for. But there are are so many options to try, this is so promising! We've seen members here who were doing very well on these meds, treating cancer as a chronic disease.

Good luck to you, fingers crossed quality of life won't be affected and meds would keep cancer at bay.

lobbyist0724

Thinking of you jazz, and thank you for sharing your updates. It has been a while since our surgeries in 2016, and many treatments are now available, including these cocktail treatments that are promising. I wish/pray for you the best outcome and Uncle NED will visit you again soon!

jazzgirl

I'm holding onto the words "cocktail" and Uncle Ned. Looking forward to both of them (well, a different kind of cocktail) down the road. My wife calls the oncology docs the "potions masters". All these help my attitude. Take care~