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Being proactive and then some

Srashedb
Posts: 482
Joined: Dec 2013

 

when my husband was dx in July, 2013, it was through the MRI; it noted lesions at the T11, L2 and an area in the sacrum at S1 and S2 and of course, the mass in his right kidney 

as he went through tests to stage the cancer, he had a Pet Scan which again noted those areas followed by CT scans.

He was treated for the T11 and the L2; the latter was of the utmost concern since it was narrowing the space and could compress.

following the three procedures, he has had regular scans with and without contrast as well as bone scans. 

This last time, his creatinine was 1.68 and contrast was not used. The bone scan noted an "uptake" in the sacral area "likely degenerative ".

he met with the the oncologist and all was fine as he viewed the scans. The final report, however, was not there. A couple of days later, the abdominal and pelvic scan noted a 3.3 lesion on the left sacrum and a 1.5 on the ilium. Since the reports are posted, I read it at 1 am Monday and called the oncologist at 8 am. I directed him to the initial MRI and Pet Scan from 7/2013.

my husband is now having a biopsy on 1/2 (5 days before we leave for a 2-week vacation to Hawaii) to determine what this lesion is. The oncologist wants to confirm, distinguish and obtain metabolic nature of the cancer for a very promising treatment should my husband ever need it. He mentioned that my husband's cancer has been unusual and that these patterns might also be Paget's.

it is quite a learning experience on diagnostic tests and the questionable use of contrast. It also has been a learning experience on the value of an MRI. Researching this, I am finding that MRI is the best in looking at the spine and abdomen. Yes, it takes longer and yes, it is more expensive than CT scans but it detected this area from the start and was missed for 18 months on the bone scans and CT scans with and without contrast.

my husband has had absolutely no pain in that area at all and that is an additional reason for the oncologist wanting the biopsy. It will be a guided needle to the ilium deep bone and the doc had to fight radiology to get it done since my husband has had three treatments for renal cancer and radiologist assumes this to be metastatic. For me, the significance is that if it is renal cancer, it is not a recurrence but rather an untreated area which hopefully will receive cyberknife but I am also concerned that it might have grown and require more.

we are told that the treated areas on the spine were very slow-growing 

any thoughts on this are welcome 

Sarah

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Sarah, I don't have any knowledge on this but it almost does sound like it is something that has been there, but just missed.

I hope the biopsy goes well and you will be able to thoroughly enjoy your trip to Hawaii. It is fabulous there.

I have said this before, and I will say it again....as a caregiver, you rock!

Hugs

Jojo

Srashedb
Posts: 482
Joined: Dec 2013

Jojo, thank you for saying this; this has been very stressful and with the holidays hard to find medical people to help 

so, I resort to google for assistance but as we all know that can be daunting 

terminology used by radiologists is, to say the least, difficult and often common words have strange meanings.

when he was dx, it was the 4th of July weekend and we had a 4-day weekend with nothing but the info that it was a large mass in his kidney with mets to the spine. 

trying to stay busy and not as obsessed but it's hard; seeing our granddaughters was a huge distraction 

the oncologist didn't see any reason to change our vacation plans so it's a go. I love hawaii; we've been to a different island twice since he got dx and this time, we are going to Maui. He hasn't been there in 16 years and it's been 6 years for me so hoping we can fully relax.

Sarah

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Hi Sarah, 

I hope you have a great time in Hawaii. Do I understand your post to mean that there is a possibility that the bone mets may actually be a different issue altogether? I was not sure if that was the case or not, when you mentioned Pagets Disease. 

Wishing you both well and good weather. 

Srashedb
Posts: 482
Joined: Dec 2013

yes, you understood what the oncologist told us; he thinks this cancer, even being renal which is unpredictable enough, has been extremely so with my husband 

he is asking for this biopsy to confirm renal, see if it's something else and to also get the metabolism of it. The latter for some treatment which is currently in trial but which appears very promising 

he viewed the scans and the lesion had not been readi apparent but it was mentioned in the first MRI and follow-up PetScan.

no one seemed to be concer with it; the radiologist who read the scan (without contrast) was the first since the staging 

not leaving until the 7th

Sarah

a_oaklee
Posts: 556
Joined: Nov 2013

Hi Sarah.  I've always thought that your husbands history is quite similar to my husbands.  What's been interesting to me is the difference in the treatment plan.  

This is just an FYI.  My husbands bone mets were found at the same time as his kidney tumor.  Within a couple of months he was given Xgeva and still continues to receive it monthly.  He also had cyberknife at the time of diagnosis for the bone mets on his vertebrae.  Besides seeing the renal oncologist every three months, he also sees the interventional radiologist and neurologist.  Every three months he has an MRI of his spine.  It has been 2 1/2 years.  We are now at 4 month intervals and hopefully will be at 6 months soon.  When my husband had a new spot it was considered to be another met.  We have never had biopsy of the bone areas, except for the initial removal of one of his vertebrae.  I really wouldn't want my husband to have each site tested.  He says the same thing.  He has been on targeted therapy the entire journey.  Our oncologist believes the Xgeva along with the targeted therapy is keeping him  NED.  The CT/PET scans are done every 4 months.   We are both kind of surprised that your interventional radiologist isn't doing frequent follow-ups.  Or is he/she?

I wish the very best for your husband and you.  Have a wonderful time on your trip to Hawaii.  

annie

Srashedb
Posts: 482
Joined: Dec 2013

Annie:

what targeted treatment is your husband getting? My husband and yours definitely have similar cancer and mets.

my husband never had a biopsy; he had the laminectomy to the L2-4 mets and it was done first because of possible compression. He developed an intestinal blockage from the narcotics after the laminectomy 

his biopsy will be done by an interventional radiologist. I will be insisting on MRIs after this. He also sees a nephrologist to monitor his kidney function and has said no contrast so I think that my pushing for MRIs is reasonable 

what effects does the Xygeva have on your husband? I know it strengthens your bones and I am half-expecting a recommendation for the spinal issues . Is this the targeted therapy you are mentioning? 

Until this biopsy, I didn't know what intervenaltional radiologists did but it turns out that Ucsf has one of the best in the country and he will be seeing the department head. I would love to discuss all of this further with you if you are open to that.

hoping we can do Hawaii without problems 

Sarah

a_oaklee
Posts: 556
Joined: Nov 2013

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

 

vinnyc
Posts: 19
Joined: Jun 2011

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.

 

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

One correction.  Xgeva is not a kind of bisphosphonate.  It is a mono-clonal antibody that inhibits RANKL (the RANK ligand).  It does result in the same results on bone mets - but, unlike Zometa, it does not stress the kidneys.  On the other hand, it suppresses the immune system.  Zometa does not.

Srashedb
Posts: 482
Joined: Dec 2013

thanks, Neil, that is helpful information; so far, he has not had that. My husband does not need anything that will damage the kidney.

i have heard of foxoma(sp ?) being used; women take it for osteoparosis 

the plan, I think, is if the biopsy shows renal cancer, another cyberknife procedure 

that has been great for the T11 although all of the scans show it as osteoblastic destruction which the oncologist has assured us is a good thing, meaning the T11 is under control.

Sarah

Srashedb
Posts: 482
Joined: Dec 2013

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

a_oaklee
Posts: 556
Joined: Nov 2013

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
Posts: 482
Joined: Dec 2013

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

a_oaklee
Posts: 556
Joined: Nov 2013

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
Posts: 482
Joined: Dec 2013

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

a_oaklee
Posts: 556
Joined: Nov 2013

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.  

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Annie,

Good news on your husband's scan. Hopefully the MRI is clear - or at the very least shows something that would help with the answers as to why he is so much pain. Would a nerve block affect his ability to walk?

I can feel your exhaustion through your post. So much you have been through lately. Praying that your challenges diminish substancially and things will start to improve. Stay strong - you well get through this!!

Big Hugs,

Jojo

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