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D iane

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D iane last won the day on September 24 2020

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  1. Bumping this up as I just re-read this whole thread. Coming up on a year, things are so different. We are doing fairly well with adjusting. I did start on a low dose anti-depressant after 9 months of thinking I could do it without. It is a help. We miss him. I still stop in from time to time and post if I feel it will be a contribution to the conversation, and maybe it will help someone. The SCLC section is not very active, and we all know why. It is a bit encouraging that there are some new studies (like identifying sub types) underway. It is such an aggressive disease. https://medicalxpress.com/news/2021-04-genomic-treatment-approaches-advanced-small-cell.html#:~:text=A%20new%20study%20of%20advanced%20small-cell%20lung%20cancer,linked%20to%20patients%20developing%20resistance%20to%20certain%20therapies. https://www.eurekalert.org/pub_releases/2021-01/uotm-sds012121.php Take care everyone, I thank you for all your support.
  2. Either way sounds like you will have to go through something. Thanks TJM, I had not looked into the laws and how dumb is that to have to swallow pills? I would say depending on the uptake you have in other places can maybe help you determine to do treatment or not? My husband was given 3-4 months at diagnosis with no treatment. Treatment extended his life-with a good quality to 7 months. His was a much more aggressive cancer than yours. His decline was during the brain radiation, so to me, if it's not in your brain yet, I would try treatment. Just my .02. Sorry, I know it's a devastating diagnosis, but you're still alive.
  3. I lost my husband to the small cell beast. We were here for him everyday (one blessing of working from home during a pandemic), and we cherished each and every moment we had between progression. That's really all you can do. I am truly grateful he wasn't too depressed, so neither were we. I actually had him in the shower one morning before a Dr. appt., a follow up from doing the Topotecan treatment. I didn't realize he had pneumonia, only saw him short of breath once and for a short time, however, his blood ox was low and he was sent to the ER, admitted, and that is where he gave up a few days later. So, I feel like the side affects from chemo and radiation, getting pneumonia was the actual cause of his death, and not another progression of the cancer. It's really hard to know. Your mother may or may not know. I can only advise just be there, you don't have to get it right, just being with her will be good enough. Please reach out if you need us. I am hopeful that she did well with the amount of time from her 1st line treatment to now, so the Topotecan should provide her several months more. My husband didn't have too bad of side affects from that 1 treatment. Blessings to you.
  4. D iane

    Recurrence

    Golfman, may I ask why your Docs aren't considering the same chemo/immunotherapy again? I have read that patients with 6 months or longer disease free progression, 1st line treatment may be repeated. Sorry, I am not familiar with Lurbinectedin but it is for when a platinum based chemo has failed. A synthetic tetrahydropyrrolo [4, 3, 2-de]quinolin-8(1H)-one alkaloid analogue with potential antineoplastic activity. Lurbinectedin covalently binds to residues lying in the minor groove of DNA, which may result in delayed progression through S phase, cell cycle arrest in the G2/M phase and cell death. It appears to have been approved in 2020 under the FDA accelerated approval program. So this is fairly new. Best of luck to you with the new treatment, and hope your brain MRI is still clear!!
  5. Sarah, sorry about your Dad, I hope you get some answers soon. I am in no way a medical person, and I am not speculating on your father's condition, but thought I should share with you my experience. My husband @ 60 suffered a fall at work. July 2019. He was self employed so it's not like you can just STOP working. When he wasn't getting better in 2 weeks his Doc ordered a CT of his head, which came up clear. He then went on to get his normal CT lung scan (no contrast) and it showed pneumonia. Had short course antibiotics and a repeat CT lung w/contrast in 6 weeks. Well, now we have a possible neoplasm and are referred to pulmonologist. Another month to wait, which he never made it, he landed in the ER with abdominal pain, was admitted, and biopsy was done there. He went from nothing to full blown cancer in about 9-10 weeks. It's insanely aggressive. However, a NP explained it best to me when it happened. She simply said a lot of what shows up on these scans looks like an infection. They can also show lymph nodes reacting to an infection as well. I really hope that's the case, but you are also correct to stay on it, as pain, shortness of breath, and these latest results most definitely need follow up. Good luck!
  6. Jessica, sorry to hear of your father's diagnosis. I too hope they will get him on a treatment plan very soon. It is unlikely that if his cancer is in the limited stage (only in the lung) his brain MRI will show any cancer there. May I ask how old is your Dad? If he is a candidate for surgery, that will provide the best hope!! Please let us know how it goes. If no surgery, then as Tom previously posted his treatment plan if limited stage will be chemo and concurrent radiation. The chemo is usually etoposide and carboplatin. You need to also ask about immunotherapy. You can read my signature below as I will fudge up the spelling of that med. It's possible he could receive this either during the chemo treatment, or after how ever many cycles they are going to go with at first. Your Dad will feel better after getting these treatments, and although this type can be very very aggressive, in keeping in good health, NO smoking, the cancer can become dormant for a time before progressing. The longer the better. If six months or longer, the 1st line of treatment regiment can be given again. As they work the best. There are other chemo drugs, however, I do not believe they are very reliable and rarely do they increase survival for very long. Stability is the name of the game with this type, so sending my very best to you and your Dad.
  7. So many kind words here. Hope that helps you if even a little bit. You do the best you can. I sometimes want to kick myself for not "knowing" how close death was for my husband. I am starting to move past those last few days. I don't see them as often now, 7 months later, going round and round in my mind. Just know I'm thinking about you and your dear wife wishing you both peace. Yes, and suck doesn't even begin to describe it.
  8. Just curious, was your BC also on the left side? Was this your 1st scan? Because of your bc diagnosis you may have hit the criteria to get annual low dose ct scans. I think once a person receives a cancer diagnosis of any sort, you spend the rest of your time waiting for the other shoe to drop.. Not everyone mind you, but I am always very anxious around imaging and appointment time. I had a BC DX in Dec. 2017, stage 2B, lumpectomy, rads, and also on hormone therapy. I am due for the low dose CT lung scan. I have a new oncologist so I'm sort of testing him to see if he notices next month when I see him. Again, I'm scared to go. I don't have an order for one. I've had 3 so far, and seems every year they find more to write about. I have a nodule as well. Wasn't there on the prior 2. I don't know the size off hand without looking it up. I always go by scores on these tests. My last one was a LungRads2, so I put it out of my mind. If there was anything else alarming they would have referred you. So, try not to worry, it's probably nothing. I just wanted to chime in to let you know I know the feeling. Good folks here are helpful too. That's why I'm not too concerned with mine.
  9. I too come in once in a while to check on you and your dear wife. I know how hard it is. Sending a virtual hug.
  10. Lisa unfortunately small cell doesn't test for markers (that I'm aware of) and the treatment plans are basically the same for all. If Limited (meaning still inside the lung) Chemo with concurrent radiation. Possible immunotherapy after if remaining stable. If stable for longer than 6 months, 1st line treatment can be repeated. Extensive stage, immuno & chemo in combo. Radiation mostly done on palliative basis (like bones) and brain. Few make it to 2nd line treatment but there are a few other chemo drugs to try. Best wishes to your friend,
  11. So sorry about your Mom. Hopeful to remain stable for a time is good. This cancer, as already stated the chemo can really knock it back at first until it doesn't. Everyone is different. We stayed hopeful and upbeat and we enjoyed each and everyday we had! I wish it was longer, but. Best wishes. I check in here once in great while, or you can message me if you have any questions. My husband's journey is in my signature. He was just 60.
  12. D iane

    decline

    Speaking to the decline, my husband finished the radiation on May 15th, was hospitalized on the 21st, passed on the 24th in the hospital. Never made it to hospice.
  13. D iane

    decline

    My sincere condolences to you and your family. It's a tough cancer. Please reach out if you need me. I hope I was of some guidance to you. We were on such a similar journey. I too believe you did the right thing declining radiation. Especially after surgery. We were never offered that procedure, nor were we referred to neurology. I can only speculate it was to either confirm small cell mets, or another primary. Maybe it was because of the tumor size they saw on the MRI. Mets are usually very small, maybe he had a larger lesion? At any rate, perhaps the pathology they have now will help another patient. I am so sorry for your loss.
  14. Steve and just me Please know I am thinking about you both. Anything I can do, please let me know. I am currently still using those coping skills of cherishing each and everyday, staying in the moment, that's how I am living. I just had to go in for a diagnostic mammogram and then they took me back for an ultra sound. I really hate cancer. I am OK so they say. Still having scar tissue changing by comparison. I've already had one biopsy since my treatment ended, which was benign. That's how I started this horrid year of 2020! Nerve wrecking but I have to remember I'm getting excellent follow up care and trying not to worry about anything until I have to. One blessed day at a time. Take care
  15. kjaMom. So sorry to hear about your son. Fair warning: Small cell is a very aggressive cancer with no cure, so the name of the game is stability with the treatments. He's so young. This type is only 2 stages: Limited and Extensive. It sounds like he is extensive given the mets to his adrenal gland. That is commonly where it goes first. I have not heard of Keytruda for this type, but hopefully it will work to keep the disease stable. Should he remain stable and not progress for 6 months (assuming he's probably getting scanned about every 3 mos) then he could repeat the 1st line chemo treatment again. If not, there are still a couple of other chemos that he may get. Best wishes to you both. I just went through this with my husband. I still stop in hre now and again, if there is anything I can do to help.
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