updated * New spinal Mets stage IV Clear cell & Cabo

Karen8873

Hi All,

My Mom was diagnosed with stage IV Clear cell on Dec 5th. She had bone mets to spine left rib & hips.Jan 30th she finished her radiation ,15 treatments. For the past couple of weeks she’s had stiff neck and shoulder pain & now pain on her right side /rib cage. These were not areas that were treated. Could this still be a side effect from the radiation ? Her pain meds don’t seem to be helping so We called the on call Dr and were advised to go to ER. She’s now waiting for an MRI. She’s scared it could be more Mets but Im trying to stay hopeful as her last CT scan of chest & brain were clear on 1/13.. so just hoping this wont set us back for treatment . She’s starting a clinical trial at DAna Farber on 2/23. I just want to get the treatment started ASAP .

 

**Updated 2/13- surgery scheduled for today to the C4, they will be replacing with a cage , possibly a plate needed as well.

this is my moms second surgery to the spine , first one was on L5 Dec 14, and that’s how this was diagnosed ( back pain ) the lesions on the C4 were there but small at the time. Now it’s causing pain & weakness down her arm. Not totally compressing but close . So surgery is needed vs radiation. 

talked to her oncologist last night and explaones my concern about the aggressiveness and bone Mets. Can we start Systemic treatment sooner rather than later? He agrees , and will determine if additional radiation is needed or may just decide to start her on Cabo 60mg.

For those of you with bone Mets , on cabo I would like to know how this is working ? How bad are side effects ? From what I’m told this is the best course of treatment for bone Mets . 

Karen8873

Updated

CT scan showed more Mets to right ribs & tumor on the cervical spine grew and is causing a pinched nerve . This is really aggressive , and  I’m trying to stay positive . I don’t know what the next course of treatment will be at this point. I was told Radiation  & systemic treatment can’t be done at the same time . But if we don’t treat the kidney won’t it keep spreading ? 

Angiebby75

Dont have any experience, but

Dont have any experience, but I due offer my prayers for the best successful treatment. 

Karen8873

Angiebby75 said:

Dont have any experience, but

Dont have any experience, but I due offer my prayers for the best successful treatment. 

Thank you

surgery scheduled for tomorrow to the C4. The aggressiveness of the spinal Mets is scary . Just need to get it under control so she can start treatment for the kidney already .

Abunai

Nephrectomy?

Has she had her nephrectomy yet?

If not, that is very suprising to me.

My prayers are with you and her for the C4 surgery. It's good that they were able to schedule it so soon after the imaging. That tumor is likely the cause of her new pain (as opposed to the radiation treatments).  Her surgery should aleviate her neck, shoulder, and rib pain (after she recovers from surgery). I had a T6/T7 tumor pressing on my spinal cord that they "debulked", with surgery, the day after they found it. After they debulked it, a lot of my lower extremety issues were resolved.

They may want to follow up the C4 surgery with more radiation to kill off as much of that tumor as possible. That may mean postponing your entry into the clinical trial, but just for a bit. Keep in mind that I'm not a doctor. I'm just making guesses based on my experience.

You and she have been through the wringer since Dec. It has all been coming at you fast. As the doctors get ahead of it, things will slow down and you'll be able to come up for air and, somewhat, relax.

Best wishes. Keep us informed.

AnnissaP

Hi. I am very sorry to hear

Hi. I am very sorry to hear about your mom. I cannot offer any advice, but am sure more people will add theirs soon.

Karen8873

Abunai said:

Nephrectomy?

Has she had her nephrectomy yet?

If not, that is very suprising to me.

My prayers are with you and her for the C4 surgery. It's good that they were able to schedule it so soon after the imaging. That tumor is likely the cause of her new pain (as opposed to the radiation treatments).  Her surgery should aleviate her neck, shoulder, and rib pain (after she recovers from surgery). I had a T6/T7 tumor pressing on my spinal cord that they "debulked", with surgery, the day after they found it. After they debulked it, a lot of my lower extremety issues were resolved.

They may want to follow up the C4 surgery with more radiation to kill off as much of that tumor as possible. That may mean postponing your entry into the clinical trial, but just for a bit. Keep in mind that I'm not a doctor. I'm just making guesses based on my experience.

You and she have been through the wringer since Dec. It has all been coming at you fast. As the doctors get ahead of it, things will slow down and you'll be able to come up for air and, somewhat, relax.

Best wishes. Keep us informed.

No Nephrectomy

Does everyone have a nephrectomy? I’m not sure why this hasn’t been mentioned . We met the oncologist at Dana Farber once.  She was going through radiation in RI after her first spinal surgery to remove and replace her L5. I know he said he didn’t think removing the kidney was needed. I will ask him if he still feels this way. It has been a tough few months , the aggressiveness is scaring me. Bone Mets is like a wild fire . I’m going to also ask about a bone agent , I’ve read a lot of patients with bone Mets take one.

 

Karen8873

AnnissaP said:

Hi. I am very sorry to hear

Hi. I am very sorry to hear about your mom. I cannot offer any advice, but am sure more people will add theirs soon.

Annissa

Thank you ! Trying to stay positive & especially keep my mom positive . We will get through this! 

amandac2018

sKaren8873, I will be

sKaren8873, I will be thinking of you and your mum. Try and stay positive, and it sounds like you are wonderful support for her. Sending your mum healing thoughts.

Karen8873

amandac2018 said:

sKaren8873, I will be

sKaren8873, I will be thinking of you and your mum. Try and stay positive, and it sounds like you are wonderful support for her. Sending your mum healing thoughts.

Thank you

You all give me hope! Surgery went well . Now time for healing so she can start fighting this disease! 

foxhd

Karen

I  think it helps to look at all the problems as just one. Mom is dealing with metastatic ca. It may take several approaches to get an upper hand on gaining control. Mentally it is easier to fight one bigger enemy than several small ones. I have one cancer. Not 20.

Sort of like the guy who orders a pizza. He wants it cut in only 4 pieces cuz he could never eat 6 pieces. Reduce your adversary into a more managable size.

Karen8873

foxhd said:

Karen

I  think it helps to look at all the problems as just one. Mom is dealing with metastatic ca. It may take several approaches to get an upper hand on gaining control. Mentally it is easier to fight one bigger enemy than several small ones. I have one cancer. Not 20.

Sort of like the guy who orders a pizza. He wants it cut in only 4 pieces cuz he could never eat 6 pieces. Reduce your adversary into a more managable size.

Foxhd

Thabk you for putting into perspective for me. It’s been overwhelming for sure. 2 spine surgeries since her Diagnosis in Dec.  

Hoping she can start Cabo soon , not sure yet if radiation is needed. Oncologist said that Cabo May be enough to treat the rest of bone Mets.  Fingers crossed. 

Deanie0916

Karen

I hope you and your mom can find hope through all of this!

shepp

Karen

I have stage 4 with numerous bone mets and have been on Cabo and a monthly Xgeva shot since July. The treatment seems to be working very well - pain nearly gone, other symptoms greatly reduced or gone, main tumor and mets shrunken or stable - with pretty minimal side effects. But my oncologist started me on 40 mg, which seems to be a lot more easily tolerated than 60, and he sees no reason to change treatment or up the dosage. Maybe you and the doctor should discuss starting on medium dosage? And I would ask about Xgeva.

And yes, cabo is the TKI with the most activity against bone mets. 

Karen8873

Deanie0916 said:

Karen

I hope you and your mom can find hope through all of this!

Deanie

I definitely have my moments where I break down . It’s all Been overwhelming to say the least. But I see you all fighting and it gives me hope! Just need to keep her positive as best I can.

Karen8873

shepp said:

Karen

I have stage 4 with numerous bone mets and have been on Cabo and a monthly Xgeva shot since July. The treatment seems to be working very well - pain nearly gone, other symptoms greatly reduced or gone, main tumor and mets shrunken or stable - with pretty minimal side effects. But my oncologist started me on 40 mg, which seems to be a lot more easily tolerated than 60, and he sees no reason to change treatment or up the dosage. Maybe you and the doctor should discuss starting on medium dosage? And I would ask about Xgeva.

And yes, cabo is the TKI with the most activity against bone mets. 

Shepp

I did ask the oncologist about xgeva- he didn’t seem to think it was needed. I may ask again . Her bone Mets seems very aggressive so that may be why he wants to start at 60mg? Then adjust from there ? But we need her to heal from the surgery , she’s 3 days post op and having a tough time . Apparently the vertebral artery was running through this tumor so it was injured during the surgery . They repaired it and gave scanned her to keep an eye on it. Also on aspirin as preventative for a clot / stroke. My poor mother can’t catch a break.