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Judy M.

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Posts posted by Judy M.

  1. Linda explained it well. In my case, I had 3 tumors, one in my left lung and two in my right. All three were treated one after another with the megadoses of radiation. In S.B.R.T. they hit the tumors with radiation from different directions. Have had standard radiation also for another type of cancer and the difference you notice as the patient is that S.B.R.T. takes longer per session and is accomplished in a lot fewer days. Because I had 3 tumors each treatment lasted 60 to 90 minutes and I had a total of 5 treatments over a two and a half week period. Usually S.B.R.T. is finished in 10 Days or less because they treat every day or every other day. Mine was different I think because I had 3 tumors treated and they were concerned about toxicity. Tom will probably chime in here and give a better explanation at some point. I did a blog post on here where I explained my situation and more about the S.B.R.T. I received. As I understand it this type of radiation had been used for brain Mets for some time. Then they began to use it for stage 1 patients who only had 1 tumor and were unable to have surgery to remove it because of other health problems. Recently it's been used for patients whose tumors are what they call oligometastatic ( I think I spelled that right) meaning limited to 2-5 usually and not spread to other areas. Also the tumors need to be fairly small. Mine were all 3 centimeters or less. The dose of radiation to the tumor itself is higher, but it's pinpointed to the tumor itself so is covering a smaller area. You can google S.B.R.T. for oligometestatic lung cancer and find out more. Hope that answers your question at least somewhat. Tom Galli also had S.B.R.T. and I'm sure there are other stage 1 members on here who have had it also and may want to add more to what I've said.

    Judy M.

  2. Thank you,Tom! Feel much better now that I've heard from you. Pasta sauce is one of the things I still can't enjoy also. Or tomato soup. And I loved both previously. Looking forward to getting my old taste buds back. Had no idea that side effect could last so long. Plus, though I didn't lose nearly all of my hair I lost about 1/3 of it and when the food nastiness comes back more hair loss accompanies it. But this usually only comes around for one day every five or six days now. Thanks so much for responding. 

    Judy M.

  3. Have been trying to update for a few weeks now. Had a lot of trouble signing in. All about forgeting a period in my name. But in now, so all good. Finished treatment and received my C.T. Scan and results. The 3 lung tumors have shrunk and still show no Mets anywhere. Very happy about that. But confused somewhat. For some reason I thought since I had S.B.R.T. on all 3 tumors they'd simply be gone-zapped away. According to my med. Oncologist not so. He says he's seen what looked like nodules 18 months out from S.B.R.T. and that I'll always have scar tissue there. He doesn't seem at all worried and plans to do P.E.T. Scan early December. Can any others who have had S.B.R.T. tell me what I should expect to see after this on my lung scans? Also, am 6 weeks out from my last Cisplatin/Alimta chemo treatment yet food still doesn't taste normal and at times goes back to tasting bitter like it did right after chemo. Anyone else have this side effect last this long? Any ideas on how long I can expect it to last? Good to finally be back with you guys. I'm sure Tom will have some S.B.R.T. Scan infor for me. 

    Judy M.

     

  4. I have now had 3 rounds of Cisplatin/Alimta and have 1 more round to go. My question is about side effects. Have had edema after each treatment that is at it's worst first week but lingers off and on for the entire 3 weeks. Doc gavr me 20mg Lasix last treatment, but oddly enough that had no effect. Have also continued to gain weight. I do exercise and have checked my calorie intake, so I know this isn't the result of eating more. Have checked and both Cisplatin and Alimta can cause the weight gain and Alimta the edema. Plus I have 3 days of steroids each treatment. That may also contribute. My question is whether the edema will subside and I'll be able to lose the weight when I finish treatment. Anyone else out there have some experience with this?

    Judy M

     

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  5. I just reread your original post and your tumors were biopsied which means you should have samples to test for biomarkers. A good thing. Have you received your results yet? Hope you qualify for one of the newer drugs. Easier on you and more effective than chemo from what I know. Right now I'm doing the chemo thing. I'd definitely have S.B.R.T. again. Mine was very easy without having to have the fiducials. Haven't had that experience. Chemo has been much harder than either standard radiation ( which I had for the breast cancer) or S.B.R.T.
    Just M.

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  6. Katie
    As far as I know, you were right about Cyberknife. That's the machine that uses fiducials to track your tumors to do S.B.R.T. ok them. My S.B.R.T. was done with the Varian Trubeam machine which uses C.T. to track the tumors during treatment.
    From what I know genetic testing of your tumors is great because it reveals what targeted therapy or immunotherapy drugs you might qualify for. One tumor in each of my lungs was biopsied, so I know each was adenocarcinoma. They were tested for 3 different markers for targeted therapy and negative for all three. Weren't tested for immunotherapy markers. Looks like someone dropped the ball or maybe the samples were too small? There were 2 of them but since my tumors were small thinking the samples may also have been. For whatever reason Oncologist says if testing for immunotherapy biomarkers is done it will be after they do another biopsy. Hoping that doesn't happen because that would mean (a.) I still have one if my original tumors after S.B.R.T. and chemo, or (b.) Another tumor has popped up somewhere. Obviously, I'm praying neither of those scenarios occur. We're your tumors biopsied before you had the Cyberknife treatment? If not I hope the Cyberknife fried the little devils to death and there's nothing left to biopsy.
    Just M.

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  7. Hello Katie,
    I'm the Judy M. that Tom mentioned above. I'm also a breast cancer survivor and can add my ditto to the difference in the moral support given breast cancer patients as opposed to lung cancer. And for me the breast cancer treatment was a piece of cake compared to lung cancer treatment. I also had S.B.R.T. on my 3 tumors. I had ( hope past tense is right) 1 in my left lung and 2 in my right, all small. You have actually informed me since the ones in my right lung originally presented as ground glass opacity. Had no idea this could mean future tumors waiting to pop up.
    After the S.B.R.T., which is like Cyberknife but uses a different machine and doesn't require fiducial placement, my Oncologist wanted me to have 4 rounds of Cisplatin/Alimta chemo. Am between my 2nd and 3rd round right now. Won't have scans until the end of treatment so, as usual, more waiting. Cancer treatment is great for developing the virtue of patience. Needless to say I'll be following your treatment closely since so far you and I are the only ones on the forum that I know of to have multiple tumors treated with S.B.R.T. Though since it has recently come into standard of care I expect to see more soon. I'd be interested to know the specifics of your S.B.R.T. treatment if you know them or could get them from your radiologist. Mine are in the article on my blog. As in how many fractions, grays, etc. Hope you do well. I count myself blessed to have had the opportunity to be treated with S.B.R.T.
    Judy M.

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  8. Am presently doing Cisplatin/Alimta cycles. Very tired and nauseated day 2-5. Then the tiredness gets better. But for me the nausea hangs on until about day 9 or 10, just not as severe. And then there's the nasty tasting food. This goes on from day 1 to about 7. I don't have the issue with not wanting to eat. Probably because I have 3 says of steroids each round and it eating seems to hold back the nausea somewhat. To me, my second round seemed easier than my first, but that could be because I was farther out from radiation and had found some ways to cope. I've actually gained weight through all my chemo treatments. In fact, I'm very swollen after each treatment. Each on ours about 6 lbs. on me that gradually subsides over the next week. I eat watermelon and cucumbers which are natural diuretics to try to get rid of the water bloat. Had a few mouth sores so make a habit of rinsing mouth with salt/baking soda solution at least every morning and if one pops up more often. For me the nausea that seems to hang on has been the worst. But I've been in an antibiotic that can also cause stomach upset so I'm hoping not having to take that will help next round.


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  9. Tom
    Just don't see the things you directed me to either on my Tapatalk app or when I go online to the Lungevity site. But I did find a place to submit my story and ask for help getting a blog started. So maybe that will work out. Thank you for listening and for all that you do to help us all.

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  10. Don't know how I ended up getting this in the small cell group, but proves I shouldn't try a blog. My cancer is actually NSCLC, adenocarcinoma. Maybe a smarter person can move it to the right group for me ( I hope).
    Judy M

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  11. Saw Radiology Oncologist for follow up yesterday. Got specifics on my S.B.R.T. Am writing this because my treatment plan has been rather unique. Hoping if it works out it will help someone down the road. Tom suggested a blog, but have no idea how to do that. So here is what I've done on advice of Med. Oncologist: Had 5 fractions of 1000-1500 centigrays each on all three of my lung tumors at twice a week over 21/2 weeks for a total of 4500-5000 centigrays. S.B.R.T. is normally done daily or every other day. I'm thinking they gave me a couple of days between because of Rad. On. concern about toxicity since I had received the standard radiation treatment of 33 fractions for another cancer less than a year earlier. Physicist assured me the fractions were too high for the cancer to develop resistance in that length of time. Have had no adverse reactions from the S.B.R.T. Now having Cisplatin/Alimta chemo every 3 weeks for 4 rounds. Just completed 2nd round. The difference in my treatment is that I was diagnosed with stage IV because of tumors in both lungs. That would normally mean 1st line chemo. Med. On. gave me the choice to try this for a cure and I took it. We will see when scans come up how it works out. Reason for the option was scans showed no spread of cancer outside my lungs.

    On another note ( and this one is a bit embarrassing) have had constant battle with constipation for years and normally take full dose of Miralax daily. The chemo seems to have made this an even greater problem. Was told I could take Sennekot besides the Miralax. No good. Didn't work. Ask for help and Oncology nurse told me to try Prunelax. Had never heard of it, but it works. Hope this helps someone else. Enough misery with cancer treatment for us all without having to deal with this one.

    Judy M

     

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  12. Congratulations Mally!
    Have no idea. Oncologist did pelvic and abdominal scan before chemo. Nothing there. Yay! At one time said scan in the middle of chemo and now talking scan at the end. I really think they reevaluate and make decisions based on what they're seeing as treatment progresses. Sounds like yours thinks you're doing pretty good.
    Just M.

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