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Cancer B Gone


Judy M.

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Saw Pulmonologist today and got results of yesterday's P. E. T. scan. She called up my original C. T. first and said "Do you see your tumors?" Of course I did. Can't miss the ugly black things. Then she called up my P. E. T. from yesterday and said, "What do you see?" I said, "Nothing." And she said, "That' s because there's nothing there. Your lungs are clear." I was just floored. I expected to at least see some scar tissue from the S. B. R. T., but maybe you only see that on the C. T. scans. The spot on my left hip that's been hurting some did light up on the P. E. T. She said arthritis does light up on a P. E. T. scan so it could be that or could be cancer. Said I may have to have that hip biopsied. She didn't say anything about the bone scan so it may not be available yet. Don't know. She is having another doctor look at all the scans and X-ray of my hip. Possible no biopsy will be needed. But it wouldn't surprise me if I have to have one because I haven't seen my Oncologist yet and he's cautious. Which is a good thing. Tom, of you will send me a link to it please I need to update my blog so that others in my situation will know about how the S. B. R. T turned out, which like yours was very good. I praise God I was able to have it. Doctors can treat you but only Jesus can heal you. 

Judy M. 

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Judy,

Wonderful news.  Hope that hip is indeed arthritis.  Here is the link to your blog.

Thank you for providing your SBRT experience.  This knowledge allows forum members to realize there are ways to deal with Stage IV disease with a curative intent.  Your experience is providing both hope and inspiration.

Stay the course.

Tom

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Okay, I've had another ride on the roller coaster the last couple of days and now I'm updating the update. Cancer is like trying to put our a forest fire while riding a roller coaster. You get it stamped our in one spot only to find it's jumped to another while you were doing that and the whole time you're being pulled up and down by good news/bad news. Oncologist has signed in and Radiologist's reports on P. E. T. and bone scans are now on my phone. Had 3 lung tumors and nothing elsewhere original diagnosis and on what had been done subsequent to that. Radiologist report on P. E. T. says upper left lung similar to original size, previous S. U. V. 5.3 now 1.9. Upper right lung tumor no activity on P. E. T. So that one at least appears to be a goner. Lower right lung larger. It was previously less than a cm. now 2 cm. With previous S. U. V. of 3.3 and now 2.7. Spot on hip is 1.5 cm. and 8.2 S. U. V. Plus a nodule on my right adrenal gland that has been sitting there doing nothing the entire time has now lit up at 5.2 S. U. V. My first question is where did my Pulmonologist get the P. E. T. scans she called up on her computer that didn't show so much as a twinkle anywhere but my left hip? That is utterly confusing. I missed a later call from her and have been unable to reach her since then. Bone scan says hip is suspicious for malignancy but nothing anywhere else in my skeleton. Med. Oncologist has weighed in. He wants immediate radiation to my hip before doing any biopsies. I do understand that he's probably concerned about a bone fracture. He says no hip biopsy but an adrenal biopsy. I questioned why no hip biopsy. The answer was because hip biopsies are very painful, takes a long time to get the results, and they aren't very reliable. He believes since both appeared at about the same time the adrenal and hip will both be the same type. Plus all that blood pool in my descending thoracic aorta lit up at 2.7 S. U. V. So does that mean there's now enough cancer circulating in my blood that my blood lights up on P. E. T.? Other than radiation on my hip immediately and adrenal biopsy (both already scheduled) all my Oncologist said is, "Maybe it's time to talk about some maintenance chemo. Perhaps that will give you some more time." He sounded awfully discouraged. But he had high hopes for the S. B. R. T. and he was calling me after hours probably after a long day. Still discouragement is not a quality I'd choose in my Oncologist. Haven't updated my blog yet because I honestly don't yet know what to say. Would I fight for the S. B. R. T. again? Yes. But I'm not sure I'm an encouraging example of it's possibilities right now. And on a minor point the pain in my left hip has actually been better the last couple of days. And from what I've read here if it is tumor pain the radiation should take care of that. From what little I've been able to find both cancer and arthritis can show an 8.2 S. U. V. on a P. E. T. Any info you guys can throw into this mix would be appreciated. My thought has been if the adrenal biopsy comes back cancer I'm definitely stage 4 so is now the time to think about clinical trials?What he said about maintenance chemo and the tone of voice he said it in didn't get me too excited about maintenance chemo. Thanks for listening. Nice to have a group with experience who know what all those medical abbreviations I just threw out mean. And other than a little hip pain and a limp I feel just fine.

Judy M. 

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Hi Judy,

I can see how you'd be confused. Sounds like you're getting some conflicting info as well as conflicting "doctor vibes". Have you considered asking for a second opinion? I found getting one really helpful  in regard to my treatment for cervical cancer. (My lung cancer has been more straightforward so far.) I'd want to get some clear explanations before making any treatment decisions. 

Bridget O

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Bridget

No. Had not really considered that, so thanks for the suggestion. Had considered changing Medical Oncologist if when I see him the 14th he still sounds so discouraged and discouraging. But giving him the benefit of the doubt until then. My only concern with radiation to my hip was whether it would further weaken the bone. Oddly enough, what I've read about radiation for bone mets says part of why it's done is to strengthen the bone. Which conflicts with my being told that the rib bones on the side where I received  radiation for my breast cancer would be more fragile and likely break in a fall or car accident. I'm thinking the adrenal biopsy will shed a bit more light on exactly what's going on. I'd hate to have to change hospitals for my treatment if I should decide to get another opinion or another Medical Oncologist. I've been very happy with my treatment and the other doctors (and my Med. On. also) up to this point. But may have to consider that. 

Judy M. 

 

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Judy,

Conflicting answers and opinions is enough to drive anyone crazy.  Like Bridget, I also think a second opinion is a good idea.  I want a doctor who will fight until there is absolutely no alternative.  There are just too many treatment options available.

Let us know how it goes.

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Susan

My thought exactly! Seemed to me if I wasn't ready to thrown in the towel after going through the treatment he shouldn't be either. Thanks a lot for that. 

Judy M. 

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Judy,

Let me restate your PET results to ensure I completely understand everything. (i) original dx - three tumors in lung; (ii) lung tumors: residual (upper left lung) SUV 1.9; residual (upper right lung) SUV 0; residual (lower right lung) 2 cm, SUV 2.7; (iii) hip 1.5 cm, SUV 8.2 (iv) right adrenal SUV 5.2. 

Your first concern: accuracy of your pulmonologist PET interpretation. My opinion, obviously pulmonologist did not completely examine report. 

Your second concern: Medical oncologist suggests immediate radiation to hip and biopsy to adrenal.  Rationale? High probability the type of cancer in both locations is the same.  Adrenal is easily accessed.  I agree; rationale for biopsy plan makes sense.  Radiation blasting hip tumor also makes sense.  And while arthritis may show high SUV, do you have a history of arthritis? From my understanding, arthritis does not normally start in large bones but small bone joints.  Taking the hip met out of play and attacking the adrenal with chemo makes sense.  I don't have a clue about the 2.7 SUV in your aorta blood.

On the point of your oncologist being discouraged, of course he or she is.  There were high expectations that your IMRT would be curative and if I were your doctor, I'd be disappointed it was not.  

Remind me again about your type of lung cancer: adenocarcinoma or squamous cell?  I think you reported your previous biopsy ruled out targeted therapy (adenocarcinoma).  What about immunotherapy markers (PD-L & PD-L1)? I'm reading that Keytruda is being given in combination with conventional chemotherapy (pemetrexed and carboplatin) regardless of immunotherapy marker expression.  So be sure to ask about that possibility.  

I'm also not sure what your oncologist meant by "maintenance chemo." Does that mean treating your cancer as chronic disease?  That was in my plan once.  I know a lady who is living 6 years with chronic chemotherapy and her cancer is controlled but not eliminated. So, here is what I'd do.  A second opinion can be a good idea, but I'd get it after the adrenal biopsy.  Your basis for opinion would be what is the best chemo treatment plan going forward.  I'd get the second opinion after your current oncologist describes his or her post biopsy chemo treatment plan.  You might think about seeking the second opinion at a recognized cancer treatment center.

Unfortunately, lung cancer is persistant.  You've had your first recurrence; I had four.  We were really excited about the probability your treatment would be one and done.  It was successful to the extent that the tumors in the lung are toast.  There is goodness in that result.  Blasting the hip tumor necks down the problem space to the adrenal gland.  I don' t have any idea about the aorta blood flow SUV except it is less than 3.0, the concern level as I understand it.

Stay the course.

Tom

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Hi again,

Here are a couple of thoughts about radiation and second opinions. These are based on my experience with a Stage 3 Cervical/endometrial cancer, not my more recent and Stage 1A lung cancer. About second opinions. it doesn't mean you have to change hospitals or doctors. In my case I was limited to the one hospital associated with my HMO and to  a limited number of HMO doctors. I did self-pay for an out of network second opinion and took the report to my medical oncologist, who agreed to to the treatment recommended in the second opinion. I was very satisfied with the experience altogether.

Regarding radiation, I had radiation over my wholdepelvic and lower abdominal area. CAT scans a year or two later showed "insufficiency fractures" in my sacral wings. I think this is  a thin part of the pelvis.. The fractures were  not displaced--the broken ends stayed together.  My radiation oncologist said these fractures are not uncommon and were  caused by the radiation.  I'm glad I had no symptoms from these-- from what I found on-line, some people have symptoms and some don't. It does make me a little nervous about what else might break, though!

My mom had bone mets from breast cancer and had radiation to her lower spine area. This relieved her pain- not sure if it wiped out the mets there. She never had any breakage or other problems from the radiation.

I don't know if this information will be helpful to you or not, but here it is!

All the best.

Bridget O

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Okay. Saw Radiology Oncologist, got my tattoos for hip radiation starting next Tuesday probably and more light shed on what's going on. Radiology Oncologist is quite upbeat. He walked in and said, "Well, we got em we just didn't get em quite soon enough." Since I still had 2 visible lung tumors with some P. E. T. uptake I'm thinking failure there also. He said, "No, I don't consider those values to even be cancer." So, score one for Tom. You're so smart! When ask why they believe what's in my hip is certainly cancer and not arthritis he said because it's in only one hip and if it was arthritis would be in both. So, that answers that question and pretty close to what Tom said. Had ask my Oncologist's A. P. on the phone if the radiology on my hip would eliminate that tumor. She said no, it would just shrink it and maybe help my pain. Dr. Pedersen my Radiology Oncologist vehemently disagreed. He said, "I can't promise you this won't pop up somewhere else but I'm going to kill that tumor. When I get finished with it it'll be dead. And I've never yet had to go back and do a repeat." So, some good news there. He also says he can treat my adrenal tumor, but we didn't go into a lot of discussion about that because biopsy isn't done yet. He thinks I should push to get to try Opdiva. I was thinking some along the same line. Haven't ask yet, but really hoping I can go back to exercising after radiation takes care of this hip pain. That's part of my reason for not wanting weakened bone there. How wonderful to know my S. B. R. T. was a success and not a failure. Now after giving it some thought I know more how to update my blog. Thank you all so much for your input and help. Thank you for reminding me, Tom, that your N. E. D. didn't come until after you'd fought 4 rounds in the ring with your lung cancer. And Merry Christmas to you all. 

Judy M. 

 

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So, saw Medical Oncologist today. First off wanted to let Tom know the S. U. V. of 2.7 in my descending aorta is not cancer and nothing to worry about. He says this is possibly just my body's reaction to my treatment. It's not picking up cancer in my blood or anything like that. Hope that helps anyone else who gets something similar in their radiation report. His plan going forward is Keytruda or Opdiva. I could not have either of those as first line because my PDL-1 was less than 1% and it must be more than that for approval. Now that I'm into second line treatment we can try that. That's what he meant by maintenance chemo. I also had a mild response to something else on my previous biopsy (I'm kicking myself for not writing that down) that he's going to have special testing done to look at on upcoming biopsy. There's another approved drug for that he really wants to try. He didn't sound nearly as discouraged and discouraging today. He probably was just really tired the last time we talked. He agrees with Radiology Oncologist that my lungs are no longer a concern. His disappointment is in the fact that the Cisplatin/Alimta had little effect on my cancer. Going to have another brain M. R. I. since I've had some dizziness recently. Good news is that my hip tumor is small and in a place unlikely to cause a fracture and easy to radiate. Bad news is that according to Medical Oncologist my cancer will keep coming back. So looks like the battle will continue more or less for the rest of my life. But from reading this forum I'd say that's pretty much true for all of us on here to a greater or lesser degree. Thanks for being there and for listening. 

Judy M. 

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  • 2 weeks later...

Hi Everyone

More update and more questions of course. Radiation on my hip is going well and the pain has decreased a lot. Enough that I went back to exercising this week (after consulting my Radiation Oncologist about that of course). Medical Oncologist wants to start me on Opdivo. My only concern about that is that I have respiratory allergies and asthma and I know this could make those worse. But seems like the next choice. Could try another chemo combo instead but first chemo was no fun and failed so not really wanting to go that route. Preliminary biopsy report came back. Very puzzling. It says: the immuno profile of this tumor is nonspecific. The negative stains for BRST2, estrogen receptor and progesterone receptor make a breast primary unlikely. The negative TTF1 immunistain is not characteristic of lung adenocarcinoma. Also says the adrenal tissue contains portions of partially necrotic tumor. So, I read that this doesn't appear to be EITHER breast cancer or my lung cancer. So, since that nodule has been there since my first C. T. scans doing nothing until now how can we be sure it IS cancer? On reading about partially necrotic tumor I get opposite reports on Google. Some say this is good because means your immune system is having some success at fighting the cancer, others says this indicates a very aggressive cancer. More specific biopsy tests may not be back for up to 3 weeks. S. B. R. T. for adrenal tumor has been offered as an option. Radiology Oncologist can't say if he can do this until he does scans and takes a good look at what he calls "how much room I'll have to work with". And there are some nasty results and side effects possible with that. So I'm thinking and praying about all this and throwing it out to see if any of you have had this done. Haven't seen it anywhere yet. The other marker I couldn't remember I had some response to on original biopsy was ROS1.  Confirmed that today. But even that is confusing (even to my Medical Oncologist). It actually says I HAVE ROS1, but not a disarranged ROS1 or something like that which is what my Oncologist says you should see. If nothing else it has his avid attention. He actually showed that to me and explained the above and said, "So what does that mean?" Then went out to get a nurse onto checking to see how fast he can get his latest biopsy reports back. I do know from my own research that ROS1 is pretty rare. There is a drug approved for it and he's itching to get to try it out. He tends to be a rather adventurous, pioneering sort (proof being my lung S. B. R. T. on the 3 tumors). Given my situation I actually think that's probably a good thing. I seem to be what medical people tell you that you never want to be-unusual. So, what experiences or education do you guys have with Opdivo, adrenal S. B. R. T., and ROS1? Thanks for anything you may have to add to my mulling over process. It's like we're never given 1 decision to make, but rather handed an entire stew of things to sort out all at once and in a short period of time. 

Judy M. 

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Hi Judy,

No wonder youre confused. I have no experience with any of the things you mention. Sorry I can't be any help! You have challenging decisions to make. Hang in there!

Bridget O

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Thanks for the support Bridget. Sorted some of it out in looking further into the preliminary pathology report last night I think. They are probably thinking the tumor on my adrenal is the lung  cancer because it's Cytokeratin 7 positive. So, I'll go with that. Also did more research on adrenal S. B. R. T. and doesn't look as spooky as the Med. Oncologist made it sound. But then he's the Med. On. and not the Radiation Oncologist. Have learned that one specialty doesn't necessarily understand a lot about the other. Not seeing a lot of bad side effects showing up in the research on Google. The Opdivo looks a lot like chemo. You just have to take it to know how your body will respond. Results vary. Could be amazing, could utterly fail to do anything, Could have really bad side effects or none. Have 3 days to think about all this coming when I'll have no tests, treatments, or doctors to contend with and I'm looking forward to that. Hope some on here have some experience or knowledge to add because I value the input of this group. 

Judy M. 

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Judy,

Pardon in advance. I’m on a cell phone so it is difficult for me to look things up to bolster my answer. 

Ive never had Opdivo so have no first hand experience. But if there is a 33% chance of it working and a 100% chance of SBRT frying the adrenal tumor, I’d have both. 

When I get home I’ll do a little reading up and give you a better answer. 

Stay the course. 

Tom

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Thanks, Tom. Pretty much made that decision today after talking some more to the doctor who will do the S. B. R. T. plan for the adrenal. He also did the plan for my lung S. B. R. T. I learned a lot talking to him. He was a professor at a university teaching hospital. Says he's done S. B. R. T. for lung hundreds of times, but only 3 times on adrenal glands. But that he's done it a lot for liver mets and the liver is actually more difficult. If he thinks he can do it safely he will. I don't know where you got the 33% success rate for Opdivo, but I like that number. Learned that I'm going to get Opdivo because my PD-1 on original biopsy was less than 1%. If PD-1 is high Med. On. Will go with Keytruda and if low Opdivo. Also learned that success rate for lung S. B. R. T. is about 90%. And doc said he'd guess success rate for adrenal S. B. R. T. is about 50-80%, but enough of it hasn't been done to have actual statistics. I'm staying the course and looking forward to what you find out when you get to your computer. Happy New Year. I'm planning an uneventful holiday week end. 

Judy M. 

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Judy,

I'm now back home and have spent a couple of hours reading into your situation.  Here are my thoughts (please keep in mind I am not a physician -- your doctor's advice is best):

  • If it were me, I'd opt for a two phased assault.  If the doctor allows, I have the treatments concurrently.  If not concurrently, then sequentially.
    • Phase 1: SBRT on the adrenal met
    • Phase 2: Opdivo.  The reason I'd have Opdivo is because of information I found in this paper. You are in second line therapy. I assume your forthcoming biopsy will show low levels of PD-L1 as shown on your first biopsy. The second line immunotherapy recommendation in the paper is for nivolumab -- the drug trademarked as Opdivo.

My statement of a 33% chance of Opdivo working is not based on a statistical analysis.  I used the percentage to indicate the three possible outcomes of taking a drug:  the drug works and kills the cancer, the drug works and controls the cancer, or the drug does not work.  So with three possible outcomes, you've got a 1 in 3 chance of the drug working (33%). I used that analogy because of the very high probability that SBRT will eradicate the adrenal met.  I said 100% but nothing in cancer treatment is a sure thing.  So your doctor's projection of 50 to 80% is far more realistic.  So taking both SBRT and Opdivo gives you a very good chance of NED. At lease, I truly hope so.

Stay the course.

Tom

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