Being proactive and then some

a_oaklee said:

back at you

Hi Sarah,

My husband is taking Inlyta 7 mg twice a day currently.

Xgeva, is a bone agent, and it strengthens bones.  It was my understanding that anyone with bone mets is put on Xgeva or Zometa.  I could be wrong.

My husband also had his spinal surgery as an emergency procedure to prevent compression of his spinal cord.  One of his vertebra had turned to "mush" (their words), and it was removed and a titanium cage placed in the space.

Because of the work on his spine, and the Cyberknife treatments are the reasons that he sees a Team which is made up of a Neurologist, and the Interventional Radiologist, and a Radiology Oncologist.  It's like 3 experts with us for one appointment.  They order an MRI of spine every 3 months and they all review it and tell us what's going on that day.  We are now at 4 months because of no growth, nothing new.  They ONLY focus on his back. 

Did you see the pathology report for when your husband had the laminectomy?  When my husband had his surgery there was a pathology report that said clear cell RCC to the bone.  This was before he even had his kidney removed.  We knew it was clear cell.

I hope today goes very well for your husband.  I have heard that the injection site is just a bit sore afterwards.  It shouldn't interfere with your lovely vacation plans. 

I would absolutely love to communicate with you via PM, but I want to continue to write here (if it's not too private), so that we might help others.

Aloha!

Annie

 

It also changes the bone chemistry. Cancer in the bone speeds up the osteoclasts, which break down the bone. Denosumab, Brand name Xgeva, slows down the osteoclasts. Subcutaneous injection, every 4-6 weeks. Clinicals trials shows it slows down bone mets 40%. Supplement with Vit D, Calcium. Recurring bone mets to my sacrum, so I started it. I should of started it sooner. It is a type of bisphosphonate and not without contraindications and possible side effects. I don't believe everyone is on it.

Srashedb said:

Annie:
why is your husband

Annie:

why is your husband taking Inylta? The oncologist has told us that because there is no visible evidence of disease (until this scan), he does not want him on targeted therapy since there is nothing to target and if it does recur I in the future, there might be better treatments 

we did get a pathology report with the laminectomy and with the nephrectomy and it did show clear cell, grade 2. The path report for the laminectomy (which was done first) noted it as consistent with clear cell, because the surgeon assumed a biopsy had been done.

this biopsy is to confirm it but also to get the metabolic on the renal cancer for future treat and because the way this lesion showed up seems strange to him. he will have the procedure on Friday and hopefully we will know before we leave on the following Wednesday 

Sarah

My husband is on Inlyta because he is a Stage 4 Grade 3 renal cancer patient.  He has multiple areas of bone mets that were growing in size.  (Hip, ileum and sacrum, head of femur, rib, scapula, vertebrae).  He also has one positive lymph node that was removed.  his first drug was Pazopanib, but the mets increased in size.  After 2 months he switched to Affinitor.  On Affinitor they decreased in size by 50%, but strangely a new spot showed on his spine.  After the nephrectomy he started Inlyta and all the mets are showing no evidence of metabolic activity.  Nothing lights up on the CT/pet scans.

The cyberknife doctor makes a point of telling us that the cancer is not gone, but is inactive.  He says it is like being dormant.   The cancer cells have traveled through the vascular and lymphatic systems and so far have only grown in the bones.  It is pretty difficult to put this in writing.  I know you must understand.

The oncologist does not want him to stop Inlyta.  We don't want to do anything that might trigger growth.  

I hope I've answered your question.  I'm just repeating what we have been told.

Best wishes.  Annie

Srashedb said:

Different treatment

your husband's treatment is quite different than what our oncologist recommends; cyberknife treatment definitely does not cure but rather destroys the area and the cancer can return 

because he was dx with the spinal mets, the cancer is likely hiding somewhere but because there are meds that target certain organs, he wants to withhold them.

this last testing has opened my eyes to scans; the radiologist who read the scan without contrast told us that often, the contrast can hide small areas while lighting up others.

so, in August when this started to grow, bone scans and cat scans totally missed it; on the other hand, the MRI done at the beginning showed the areas as suspicious but nondestructive 

from now on, we will demand MRIs for the spine and abdomen areas and pass on the bone scans. This bone scan did not pick up the spot either.

we are really hoping to meet with the oncologist before leaving for Hawaii but the timing is not great. 

I wonder if the grade of the cancer is the reason for the difference in treatment. My husband has stage 4, grade 2 . The laminectomy report was also grade 2.

Annie, you are such a great connection. 

Wishing you and everyone on this forum a healthier new year.

Sarah

Sorry it has taken me so long to respond to your last post.  My adult children staggered their visits coming home for the holidays this year.  We had such a nice time seeing all of them along with the grandchildren.  

This past week my husband had his CT/PET scan again.  We will get the results on Tuesday this week.  The week after that he gets the MRI of his spine, but will see the docs on the same day.  Before all of this happened we both just saw the doc once a year for physicals and my husband didn't take any meds.  Now he has so many medications and lots of appointments to coordinate. 

One of the things that troubles me most about ccRCC is that it seems like the best treatment comes from the patient being knowledgable, and seeking out what they desire in terms of treatment.  I know this exists with other illnesses, I just wasn't really aware of it.   I feel a burden of responsibility.  Over on SP, there has been some statements that my husband should not be taking targeted therapy.  The oncologists are adamant  about the necessity of him staying on it.   The fatigue from Inlyta is difficult to cope with.  Even the Ritalin doesn't seem to be helping as much as it once did.   I know things could be worse.  

You were mentioning differences in our husbands... Besides the grade of 2 versus 3, I believe my husbands bone mets are more widespread, and not just in his spine.  And then there is the lymph node involvement.  I know we shouldn't compare ourselves to other patients.....I just feel this overwhelming responsibility to learn all I can to be helpful to husband.  I have such little faith in doctors...mostly due to differing opinions, and past negative experiences.  I feel the need to be vigilant.

(to Sarah:  I am happy that we are comparing notes and helping each other.  PM me anytime, or post.  I only get online about once a week currently.  I know you are in Hawaii, and I hope you are having a really wonderful time). 

Annie

Srashedb said:

So true

Annie, you hit the nail on the head; yes, we do need to stay on the case. Back in 1992, when I was dx with breast cancer, the recommendation of every oncologist was chemo.

after reading Susan Love's book, I realized that chemo had unbelievable toxic effects and did not necessarily hit cancer cells so I sad no. Then, I asked to take a med that had great results for post menopausal women which I was not. I demanded it and years later, that med is widely used.

now, I am back in "medical school" which was NEVER my intent but if we don't seek out the information, we might not get it. It is exhausting and stressful but well worth it.

Sarah

Just letting you know that my husbands last scans in December were negative again!!!!  He gets the MRI of his spine in a couple weeks.   As you can imagine we are very happy with the results so far, but the back pain and fatigue is taking its toll on him.  it's very negatively affecting the quality of his life.  We are going to be pursuing perhaps  a nerve block.

Ive been really busy and emotional dealing with my mothers estate.  it's so difficult and mentally and physically exhausting.  I'm not going to even bother to say more about it.  I'm just hoping by summer to have most of it complete.   My health is taking a beating.  I cant really share all of what I am going through with my husband as he doesn't really feel well.  I miss that part of our life together.   I did take off for a couple days to visit the grand kids, and it was a wonderful escape.  Little ones are so joyful and sweet.  I'm finally able to walk without the knee brace and I can drive again.  I'm really glad about that.  Being on crutches was no fun at all.