Jump to content

Judy M.

Members
  • Posts

    348
  • Joined

  • Last visited

  • Days Won

    20

Everything posted by Judy M.

  1. Susan That's great!! Thanks for sharing. Judy M.
  2. We do also have compassionate care drugs available in the U. S that have not yet been approved. I know because my last Oncologist who wanted to try the Opdivo/Yervoy combo next said that was the way he could get that. Judy M.
  3. Yes. I have put my daughter in charge of giving medical updates to the family. I've often said that telling the family is as difficult as getting the news yourself. Judy M.
  4. Tom Ain't that the truth?!!! Mine are coming up again next week or two. I've actually had so many now I've lost count. For me at least, some of the scanziety has worn off after 21/2 years of this. Judy M.
  5. Judy M.

    Tis The Season

    Thank you, Tom, and Merry Christmas!! We had missed you on here recently. Thankful today that Jesus came and that He has given me the strength to again cook Christmas dinner for my family. A blessing. Judy M.
  6. Time to try again to update this. Have only my Android phone to work with and for some reason what I'm writing tends to disappear in the midst of writing it and will sometimes reappear and sometimes not. So if an update I've tried to write previously appears before this that's the explanation for that. Have now had both PET and bone scans. I had 3 tumors in my lungs and no spread elsewhere before S. B. R. T. and 3 rounds of Cisplatin/Alimta. PET shows tumor in upper right lung no activity. Tumor in lower right lung enlarged a bit and down from previous S. U. V. of 3.3 to 2. 5. Tumor in left lung similar in size previous S. U. V. 5.3 and present S. U. V. 1.9. I must admit that I'm disappointed that they didn't all disappear like the one did. But Radiology Oncologist says he doesn't even consider those values to be cancer. Bad news is that I now have a 1.5 cm. tumor in my left hip that has been causing me some pain and lit up at 8.2 S. U. V. and also showed up on the bone scan. Will start radiation for that this week and Rad. On. assured me that though he can't promise me it won't show up somewhere else he's going to kill that tumor. Also a nodule on my left adrenal that's just been sitting there doing nothing is now 2 cm. and showed up at 2.7 on PET. So that will be biopsied on the 18th. So, that's my latest news. Would I still choose S. B. R. T. with a curative intent with limited stage 3 or 4 lung cancer and surgery not an option even though this round of the battle didn't come out N. E. D.? Yes. I still think in my circumstances given the options I had available at the time this was my best choice. And I believe S. B. R. T. is going to save some lives that would otherwise have been lost. Judy M.
  7. Had my last chemo on Aug. 3 and C. T. scans of chest, abdomen, and pelvis toward the end of August. The 3 tumors in my lungs had shrunk and still no spread of the cancer seen anywhere else. Have recovered from chemo side effects and just been enjoying not having to think about or battle the cancer for a while. Don't seem to have any long term effects from the radiation. Had a short bout of more coughing and shortness of breath right after last chemo. But from what I've read this could have been the result of the chemo or the radiation or both. A short course of steroids took care of that and have had no trouble since then. Will be having P. E. T. scan in early Dec. So far, have been happy with my treatment. I believe it was the best I could have been given in the circumstances. Judy M.
  8. 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.
  9. 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.
  10. 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.
  11. Thank you. I do hope it's simply the result of the edema. My Pulmonologist says a lung cancer patient shouldn't complain about gaining weight. Lol. Sent from my SM-J100VPP using Tapatalk
  12. 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 Sent from my SM-J100VPP using Tapatalk
  13. I'm do happy for your good news. And no need to feel guilty. I'm sure no one on here wants to hear of bad results. Good results encourage us all. Be happy and enjoy! I've really enjoyed following your posts. Judy M Sent from my SM-J100VPP using Tapatalk
  14. I deal with stress,by prayer, journaling, art work, and exercise. But from what little I've read about mindfulness most of those things fit the profile Judy M Sent from my SM-J100VPP using Tapatalk
  15. Glad you're doing well. Judy M. Sent from my SM-J100VPP using Tapatalk
  16. Said a prayer for you. So far with this cancer thing the one thing that has made me irritable sometimez is waiting. And there's plenty of that on this road. So I can relate. Sent from my SM-J100VPP using Tapatalk
  17. 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. Sent from my SM-J100VPP using Tapatalk
  18. 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. Sent from my SM-J100VPP using Tapatalk
  19. Thank you, Pearl. Others may have known that, but I didn't. Sent from my SM-J100VPP using Tapatalk
  20. 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. Sent from my SM-J100VPP using Tapatalk
  21. 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. Sent from my SM-J100VPP using Tapatalk
  22. In March of this year I was diagnosed with stage IV NSCLC, Adenocarcinoma, as the result of a case of pneumonia. Already under the care of a Medical Oncologist as the result of having been treated for another type of cancer the previous year. That treatment went well, NED. On my first consultation he explained the standard treatment options for stage IV. What I was hearing ( and said to him), was, "So the bottom line is I'm dead." I have to admit that I taped the consult and was a bit ashamed of myself when I listened later. I actually like my Med. Oncologist but was very aggressive. Finally, he said, "Okay, you're young ( not really), and healthy and respond well to treatment, so let's go for a cure." He had done a study with some other doctors on treating Oligometestatic lung cancer with a curative intent. Oligometestatic means, in my case, that I had a nodule in my left lung and 2 in my right lung, but P.E.T. showed no spread outside my lungs. C.T.'s done since then still do not. Talked with my family and we decided within 24 hours to go with his plan. His plan was to give me S.B.R.T radiation on all 3 tumors followed by chemo. Then hit a snag with Radiology Oncologist. He didn't want to do rhis. His concerns were that it wasn't standard of care ( it has since come into standard of care) and that I'd had 33 standard radiation treatments to my right breast the year before, so he was considering possible toxicity issues. I persisted, my Med. Oncologist persisted, and by God's grave a new doctor had just come on board at my hospital about the time I was diagnosed with extensive experience in S.B.R.T. So, I got my treatment. I had 5 fractions of 1000-1500 centigrays of radiation for a total of 4500-5000 centigrays over a 2 1/2 week period. It was done twice a week. Normally S.B.R.T. is done daily or every other day. I'm thinking my Rad. Oncologist chose to do it this way because of his concern about toxicity. The physicist assured me when I ask that the fractions were too high for the cancer to develop resistance in that length of time. They treated all 3 tumors each time. This took about 1 1/2 hours and I was required to lay totally still the entire time. That was the only difficult part. Had no adverse reactions to the radiation at the time and have not had any to date. Next scheduled for 4 chemo treatments of Cisplatin/Alimta spaced 3 weeks apart. Am one week out from my second treatment. Can't say I've had no side effects from this. You guys know exactly what I mean. Lol. The only scans I've had were brain M.R.I. and 2 abdomen/pelvic C.T.'s since diagnosis. Both were clear. Med. Oncologist plans to scan lungs at the end of chemo as of now. So we will see what we will see. Hoping this works out for me and will also help someone else down the road. Many thanks to Tom Galli for suggesting I do this blog, all his support, and hanging in there with me until I could figure out how to get it done. Judy M.
  23. Sorry to hear this has happened Jeffrey. Have said a prayer for you. Judy M Sent from my SM-J100VPP using Tapatalk
  24. Judy M.

    Updating

    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. Sent from my SM-J100VPP using Tapatalk
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.