Progression in bones just two months into Tarceva - 1250516

apra
Posts:142

I'm sorry to report that my husband's latest MRI of he spine showed progression in the bones. He is undergoing a pet ct today to see the disease in other areas of his body.

He was having xtreme pain in the spine and rib cage area. The MRI has shown progression. Our onc now wants to do away with Tarcva and go back to chemo but we are not willing to how away he Tarceva too quickly because he experienced miraculous recovery after jus one or wo tablets of Taceva and he started becoming better and better until the recent problems with the ascites and back pain.

The ultra sound doctor said that the ascetic fluid was very minimal, about 100ml only so tapping this would not bring any relief. He was on LASILACTONE which worked for him and brought the stomach distension down a bit and gave relief from the feeling of fullness allowing him to eat normally again.

He is in hospital now for observation and he was given pain injection Voveran (NSAID) and 1500 litres of IV fluid along with Zometa IV injection. He had missed Zometa for some months now due to tooth extraction.

I don't believe the Tarceva has stopped working completely as he s still doing god in other areas. His brain MRI also showed clean brain.

I am thinking of Samarium radio nuclide therapy which the other onc had suggested a couple of months back when he was having severe bone pain along with progression. But the bone pain disappeared as soon as Tarceva was started so the therapy was deferred. I think it is the right time now to start the therapy as he can no longer have external radiation and continue with the Tarceva.

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Reply # - November 23, 2012, 02:59 AM

certain spring
Posts: 762

I'm sorry to hear about this, and particularly about the pain your husband has been having. I had not come across radionuclide therapy before, but I see it is mentioned in a post on bone pain by Dr HarmN:
http://cancergrace.org/cancer-treatments/2009/07/26/bone-pain-in-cancer/
I hope very much it will provide your husband with some relief - and that you yourself are managing OK. Best wishes.

Reply # - November 26, 2012, 10:38 PM

apra
Posts: 142

Thank you everyone for your concerned replies. I am sorry that I could not log on until now.

CertainSpring, I read your link. Thanks, though I had read it before, I read it tis time with more interest.

Doctor West,

Your link was very informative. It shows that Cancer Grace has covered all possible options about Lung Cancer treatment. Our Pet Scan shows that there is regression in the bone mets, but new lymphadenopathy has been found with double the SUV readings from August 2012 Pet Ct scan.

I don't understand how spine MRI showed progression in bone met while pet ct is showing significant regression.

The pleural effusion remains moderate and the ascites also remains mild but persistent.

The reading shows persistent residual disease with new development of increased lymph node involvement.

The onc says Tarceva will continue but some other chemo may be added. Though the bone pain is there we are re-thinking the Samarium option as he may have to undergo chemo which may be dangerous if blood counts are lowered.

As he has never been able to have successful biopsy, we are planning to ask the doctor about the possibility of biopsying the new lymph nodes.

In the first hospital we could to biopsy at all because every time we asked for a biopsy they would reply that there is no point making him go through the pain and stress unnecessarily. But his recent bone biopsy procedure in this hospital was absolutely painless, so we believe even a lymph node biopsy would not be too painful or stressful.

Laya, wonderful to hear from you. Your chirpy personality comes through even in your writings. It is a joy. Hw is your Mom? Is she still on Carbo/Alimta? All the best.

Thank you or listening.

Reply # - November 27, 2012, 06:14 AM

Dr West
Posts: 4735

The different areas of cancer may well have different molecular characteristics, so it isn't especially uncommon to have some areas remain stable or even shrink a bit with treatment, while other areas progress. This becomes especially common as a person goes through more and more lines of therapy.

May I ask why getting another biopsy is important now? How is it expected that the results would change management?

-Dr. West

Reply # - November 27, 2012, 06:40 AM

catdander
Posts:

Apra, I'm so sorry to hear of the new progression and pain. I wanted to ask for a reminder of what your husband has been tested for. While the rest of my post was moot with Dr. West's comment I think this is still a fair question.

Reply # - November 27, 2012, 10:14 AM

apra
Posts: 142

He has not been tested for anything, Janine. We are only swimming in the dark.

Dr. West,

Yes, I get your point. The onc was sure Tarceva was working in the bones as the bones showed some regression, however the new lymph nodes are what is causing concern.

It could be an infection or it could be cancer. The only way we can find out whether it is cancer is to biopsy it I suppose. If it turns out to be cancer, then some chemo has to be added to the Tarceva I presume.

Now we just want to know whether he is Alk positive. Or in the event he needs to go into a clinical trial we still need a biopsy. The onc did not suggest the mediastinoscopy, we asked him about a biopsy, and he suggested biopsying the lymph nodes. Although ofcourse it could cause unnecessary trauma and hardship for the patient. However as his performance status is still good we thought this could be an insurance for the future.

The only way the results could change management is if he is found to have Alk or Ros 1 mutation. Otherwise we really don't know what to do now, continuing on the Tarceva only seems to be too flimsy.

Reply # - November 27, 2012, 10:38 AM

catdander
Posts:

If an infection is thought to be a possible cause of the lymph node enlargement a course of antibiotics is the alternative to a biopsy. If it works there's no need to do a lot of shuffling around with treatment. But I don't understand how the bone mets play a roll. I do know that it is very difficult (impossible?) to figure whether bone is responding to treatment by scanning. However the pain is probably a good indicator that they are progressing.

I understand your desire for an ALK and ROS 1 test if it's decided tarceva isn't working.

Do I have this right? The doctors think it's probable he is progressing in the bones and possibly lymph nodes?

Reply # - November 28, 2012, 03:17 AM

apra
Posts: 142

Janine,

You have opened my eyes to something I was suspecting. How can the MRI report show progression and the ct scan show regression? The ct says bone shows regression because they are not lighting up on he scan. As the pain the bone has increased I guess this is a clear case of progression though the doctor does not want to say so.

And if it is progression, I guess our decision to biopsy the lymph node is a good decision. Until we get this biopsy we are unable to say yes to any further chemo. He is still on Tarceva.

That it is almost impossible to find out whether bone is responding to treatment by scanning is something I need to ask the onc about.

Yes, if it is an infection it should ave been treated by an antibiotic. The biopsy is our idea, not the onc's. In fact he murmured to me that I ought to prepare myself mentally for any eventuality. But I don't buy that since my husband is really still doing quite well.

I hope the doctors also come in about studying response or non response of bone mets from pet ct scans.

Thank you for your oncern once again.

Reply # - November 28, 2012, 11:04 AM

apra
Posts: 142

Thank you Janine. In the light of our discussion I think our decision to ave a biopsy was a good one. I am even thinking of Rational Therapeutics or tissue testing with different drugs. Wonder Hw effective tis is.

Reply # - November 28, 2012, 11:41 AM

catdander
Posts:

At this time the only clinically relevant testing for your husband would be for the ALK rearrangement (aka AKL mutation but not really a mutation) and 2ndly ROS 1.

The only other would be for the EGFR mutation but there's no need because your husband is getting tarceva. Since all these tests us tissue you want to be judicious with it's use.

Tissue testing with drugs isn't useful at this time for determining treatment. It's not close enough to being foolproof. They miss drugs that may work and suggest drugs that may not work. These tests still need work to be useful.

This is a good overview piece about molecular markers. http://cancergrace.org/lung/2010/10/10/overview-of-molecular-markers-in…

and a more in-depth piece. http://cancergrace.org/lung/tag/molecular-markers/

Reply # - November 28, 2012, 11:46 AM

catdander
Posts:

As far as your specific testing sites I'm not sure but you do want to keep a close eye on deliveries and such if they must travel far. Not that tissue is often lost from one site to another but it's not completely unheard of on the web. And of course if your read it online it must be true, right? :roll:

Reply # - November 28, 2012, 12:38 PM

carrigallen
Posts: 194

Re: Discordant PET and MRI scans
Hello Apra - regarding the decision of basing treatment decisions on PET/CT or MRI, it is difficult to say in his case without being able to review the actual scans. So it is really impossible for me to say for sure in this details of his case. Certainly it is possible to have a *clinical* progression without necessarily having a *radiologic* progression. This is because cancer can cause new problems without growing significantly more on an imaging test. If the test is being done because someone is actually having more symptoms in that area, then it is reasonable to conclude that the finding is real. So if the MRI was done because he was truly having pain in his back, and it shows enlarging or new metastatic lesions, I would be inclined to think that his progression is real.

Regarding PET vs. spinal MRI. Was the PET done because the MRI findings were equivocal? Generally speaking, findings from an MRI spine with contrast are more reliable and useful than PET scan for the spine. PET is useful for suggesting areas of inflammation in the tissue of the body, but doesn't shed much light on the cause or structure of the finding. MRI spine provides definitive structure and important information about blood vessels and tissue density.

Bottom line: In general, if the spinal MRI shows *new* lesions or lesions doubling in size, then I would be inclined to trust the spinal MRI as a good indicator of progression. I hope this is helpful. One thing that may be helpful would be to see a pain specialist, who may be able to help with managing the spinal pain. Sometimes they have more dynamic methods for controlling pain than simple narcotics, like local treatments.

Please note I just providing my general perspective here on this issue; this is not intended to replace or negate his physician's recommendations, and should not be interpreted as medical advice of any kind.

Reply # - November 29, 2012, 08:42 AM

apra
Posts: 142

Janine, you are a mine of information, I really thank you fr your insights and helpful links. I will read the links through thoroughly.

Dr. Creelan,

Thank you for your response. We did a spine MRI because he was having significant pain in the spine area. The MRI showed progression, then the onc said we should do a complete pet ct too to find out the disease status in the rest of the body. The pet ct showed both the lesions in the lungs lighting up whereas they were not metabolically active before. Then the new mediastinal nodules with doubling of SUV was found, but the onc said we should continue Tarceva and just wait and watch as Tarceva would take time to work.

The scans were done not because the findings were equivocal but so that the lesions on the lungs and lymph nodes could be reviewed. Thank you for mentioning about the reliability of contrat MRI over Pet CT.

This scan shows that Tarceva isnot working, so we have asked for a biopsy of the new mediastinal nodules to find out about the ALK rearrangement and ROS 1 test.

We don't want to jump into any chemo before this. Our onc still wants to do an EGFR tet, but as Janine says, tissue is valuable so we will not do this test. We will only insist on ALK Fish test and Ros 1.

Thanks for listening.

Reply # - November 29, 2012, 11:12 AM

catdander
Posts:

I'll keep my fingers crossed for enough tissue to find an ALK rearrangement or ROS1.

It takes time to get the results back so don't completely deny chemo without talking it over with the doctors. It could keep the cancer at bay and it's worked on him before.

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