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I am wondering if anyone has sclc with mets to the lymph and liver and also has emphazema and was able to get radiation. And if so where were you treated? Docs told my mom it probaly isn't an option. I'm praying there are people out there who beat this!!
Cancer Surgery Hospice care Emphysema Diabetes Pneumonia Anxiety Sedatives Heart attack Carboplatin Palliative care Lung cancer Stress
I was drawn by your entry. My dad battled non small cell lung cancer in 1999 with chemo radiation and surgery. Now he is fighting small cell lung cancer that seems to be in a few places...liver, bones, adrenal gland, lymphnodes. his breathing is awful--on 2 lpm of oxygen all the time. We don't know if the tumor around the great vessels in his chest are what initiated the terrible trouble breathing, or if his COPD just got so bad that the tumor tipped him over the edge. He is approaching his second round of carboplatin/etoposide next week. I was wondering if radiation might be in his future if the results of the first few chemo treatments are favorable? Wouldn't radiation treatment to his chest area affect the lung tissue to reduce lung function even more? What a mess this has been for him!
Holly,
Thanks so much for your thoughts and prayers. They mean a lot to me. I also am glad we met though regret the circumstances.
I will write you again in September when I get an update.
Peace be with you.
MJ
MJ,
I am soooooo happy for you!! This news is so wonderful. Even though my mom was not fortunate enough to make it through her battle it makes me feel better knowing that people like you who are such fighters like she was can actually make it and maybe beat this awful disease.
I enjoyed reading your story so much. I hope and pray everyday that my mom will come and visit me and give me a sign that she is here. 2 years ago my step dad died suddenly of a heart attack. We were all devasted, my mom especially. She would hear things around her house and twice while she was in bed she swore she felt someone tugging on her leg. I always said "it's just Jim coming to visit you". I think she took comfort in that. I know my dad and step dad are taking care of her now, and I know that she truely isn't suffering anymore. She let me and my sister know that she was suffering during her treatment and I think she did that because in case something happened to her maybe we could take comfort in the fact that she won't suffer anymore. She was always thinking of us girls. It's so hard because she was all we had growing up and life will never be the same. I can't seem to stop crying.
I am very happy that we met because you have helped me a great deal with everything. I pray for you daily. Keep in touch and let me know any further results. Fingers crossed! Holly
Holly,
Had my CT scan and results yesterday. All lymph nodes are normal size and stable. Liver met went from over 9 mm to under 4 mm. The tiny remains of the liver met appear to be scar tissue from the radiation. No new mets evident. Dr said I am in remission for now. I don't go back until the first week of September for next scan. So I will enjoy the rest of the summer. Just wanted you to know how things turned out so far. I hope the results have a little staying power so the standard treatment for ex-sclc will be radiated on a regular basis some day.
Think of you and your Mom often. It sucks the way this beast works. It's all a crap shoot. I know your Mom is now watching over you Holly. I have to share this story with you. Several years ago I lost my Mom to lung cancer. She was living with me during her illness and had hospice care in our home. It was a long hard process. About a week after she died I was online playing an intense video game, Starcraft, with my youngest son who lives in Texas and some of his friends. My husband had just left, he worked midnight shift then and I had to get my mind off things and release some stress. In the heat of the battle I felt a pinch and a pull on my shirt, right back shoulder. I turned around to yell at my husband for scaring the heck out of me, I thought he forgot something and came back home. No one was there! I thought perhaps I was sitting on my shirt and it pulled a little when I moved. Nope, shirt was in the clear! I shrugged it off until a couple days later when I mentioned it to my sister. She said OMG MJ! That was Mom! She explained to me that whenever Mom wanted her attention and she was not responding she would do the pinch and pull thing on her shoulder. I was floored. I never knew that.
I was the 3rd daughter and had one brother who was less than a year younger. I grew up hearing the story that he was slow to talk because every time he grunted for something I chimed in and said Butch wants this or Butch wants that and got it for him. He never had to ask. I was very attentive to my Moms needs too, she never had to ask me twice and I anticipated a lot of her needs consequently she had never done that to me! Until THAT moment. It was like she HAD to let me know she was OK.
I had heard stories from other people about such experiences but never believed them. My dear late father-in-law described feeling his wife Katherine sitting on his bed. He really believed he felt it with all his heart. I
humored him but felt he was half asleep in a dream state when this happened as he was always in bed. The other two visits I heard about were similar circumstances. I poo pooed them.
But now I know they do watch over us! And take comfort knowing we will all be together when the time comes. Hope you will be blessed with peace in your heart.
Warmest Regards
MJ
Holly
Yes, The scan on June 22 is to determine the results of all the treatments done so far. The hope is for remission or at least stable. Last scan before PCI and liver radiation showed all lymph nodes back to normal size and the liver met shrunk about 75%. The liver radiation has supposedly shown a 90+ success rate.
What we are hoping for is a good report, then another scan in 6 or 7 weeks and if that is good I will get 2 to 3 month break.
I really want to stick around for a while :) I have my first grandchild due in Aug, and have promised to do the wedding flowers for nieces wedding Sept 26. A lot to look forward to!
Thinking of you and your Mom.
MJ
When you get your scan in June, is that to see if the cancer everywhere has shrunk or god willing, is gone?(NED) Or do you keep going with treatments? I still have so many questions because I don't know what will happen after my moms 4th round of chemo. I know I will have to talk to her onc but I am worried cause I don't want to hear "there's nothing more we can do". It's such an awful disease. I am praying for you and hope you can get in some "good" time while you are on a break! Holly
Holly
Good to hear your Mom is having a positive response to her chemo so far. Bummer she got pneumonia. As you know some ex-sclc do get radiation that is not just for palliative care. If your Mom continues with good response she should definitely seek another opinion on radiation.
I try to put the cancer out of my mind as much as possible during this time off. When I do think of the scan coming in June I get filled with anxiety like everyone fighting this awful beast. So, I just keep busy and push it out of my mind. Still experiencing a lot of fatigue from the PCI, so nappy time is frequent! Actually fell asleep while the computer repair man was here yesterday! Woke up and he was writing me a note about what he did! Lol! Other than that and a little more shortness of breath I feel good. Still coughing up yellow phlegm, have been since the chest radiation. Hope once that clears out the sob will get better.
Thumbs up to your Mom, Hope things continue to go well for her. Sounds like they really had to look hard for that little bugger in her liver! We can beat this thing! Prayers and hugs.
MJ
MJ,
I am so sorry I didn't respond sooner. My mom was in the hospital again for a week with pneumonia. Other than that she is doing really good. She requested an ultrasound of her liver and they couldn't see the cancer on it but did a ct with contrast and found a tiny spot. Her lung tumors have shrunk significantly but her onc isn't sure she can handle 6 rounds of chemo. I told my mom we will go elsewhere then. I am still getting the run around. I keep reading this site and people with ext sclc keep getting radiation. Her onc said they never do radiation on ext cancer. I think we may go to a different doc. How have you been? Great news that you get a little break from treatment! God knows you deserve it. Hope to hear from you soon. Holly
Holly
Sorry to be slow in responding. Last week was a tough one. On Fri. I finished my 15 days of PCI and the liver radiation. That was a bear cat! The first liver shot took almost 2 hours instead of the estimated 45 min. Had to be repositioned 3 times. The next one was just over and hour and the last one 49 minutes. All concurrent with the PCI so the fatigue really hit me this weekend.
Best news is I do not have to go back until June 22! Get a ct scan and meet with Dr Ross then. The first break of any length since treatments started last Nov. I almost feel human again.
Bummed that I lost my lovely accumulation of peach fuzz from PCI. Inside my scarf it looks like a weenie dog shed all these short little hairs! Always wondered how I would look as a redhead but not a redhead with no hair! Haha!
Your Mom is fortunate to have you as her advocate. How has she been responding to the chemo? Any side effects? Good luck with your appointment tomorrow. Will be praying you get some good news for your Mom.
MJ
MJ,
Sorry it took me so long to get back to you. No my mom never got a PET scan. Her onc didn't feel it was necessary. My mom is thinking we should wait until round 4 of chemo is done and go from there. I don't know. I am so exhausted and worried because I don't want to wait too long. I am going with her to see her onc on her next round of chemo(may 5) to ask some questions about her liver. I will keep you posted. Thank you again for all your insight. Holly
Holly
Man, I know exactly how you feel. I got the same thing from Rochester. I left there with my hopes completely dashed. That is why I found Scottsdale so amazing. When Dr Ross said "I think we can beat this thing." I burst into tears.
In the end it may not pay, but at least they are pulling out all the stops.
I can't believe they would not even biopsy the liver! How can they stage your Mom if they don't know if she has mets? Grrrr. Did your Mom have a PET scan? Did the liver spots "light up"?
I get the feeling there are a lot of oncologists who give short shrift to lung cancer patients. You have to keep looking until you find one who cares and you feel comfotable with. I heard the UofM Masonic cancer center is good. http://www.cancer.umn.edu/
You could try them.
Don't lose hope!
MJ
We went to the Mayo yesterday and saw Dr. Richardson. He babbled on a lot about things but I left there with no answers. He seems to think that radiation isn't necessarily beneficial to any cancer patients. I asked about liver radiation and his co worker Erin Deering said in certain cases where there is only one spot on the liver they may do it. They don't think testing the liver right now is necessary. I feel like none of the doctors care because they've seen it before and it just ends on death anyway. That is how they make me feel.
Holly
Have you had a biopsy on the liver yet? I have a bunch of other spots on my liver that turned out to be fatty deposits.
MJ
Holly
There is one spot in my liver. Had the simulation for the radiation done last friday. First thing they did was make body mold from shoulders to feet. Similar to the chest radiation molds but encompass full body. Then on top of that they put some stuff like heavy duty saran wrap and tightened the whole thing down, can't move.
Then they did 5 ct scans in 4 dimensions, 3d +time. This week will be spent making the program with all the info obtained. It is very complicated. Radiation will be timed to go off and on according to my breathing pattern.
Will begin the last week of my PCI, concurrent. Liver on Mon, Weds and Fri. Has to be .extremely precise as a large dose of radiation is given in just 3 days
How is your Mom doing? Have you been to Mayo Rochester yet?
Keeping you in my thoughts and prayers.
MJ
PS 7th PCI today, so far so good!
MJ,
Can you tell me if you know how many "spots" were found on your liver?
Holly
MJ,
I really enjoy when you write me with your updates. I print them out for my mom to read and she often smiles and you can tell that a little more hope comes her way. She is a registered nurse so when she was diagnosed it was hard to keep her positive because she has been around long enough to know most likely outcomes. I need all the positive info I can give her right now so I thank you so very much. Prayers and hugs to you! Holly
PS. What a cute way to get a nickname!!
Holly
Yesterday was a tough one. Had mask made for PCI, uncomfortable but tolerable. Then had the "coil" put in the liver using ultasound. Was real similar to the liver biopsy but had to hold my breath longer as had to be very still. No sedatives this time but was not to bad with local anesthetic. Funny thing happened though! when they put the coil in it sprung out of the liver spot! They can still use it as a marker, had to get a CT scan so they could determine it's position from the liver spot and know where to aim the radiation. Good news is they had a real hard time seeing the liver spot as the chemo has really shrunk it!
I go in Monday afternoon for the first treatment. 3 days for the liver concurrent with 15 days of PCI. Then I am free for six whole weeks until I get a scan to see where I am. Hopefully if all goes well I will get one more 6 week scan then graduate to 3 months. Am praying for that day :)
MJ
ps My name is Mary Jo or to friends MJ. Gazelle is a nickname my husband gave me years ago as he said I was so hard to catch!
Sending prayers to you and your Mom!
Gazelle,
I am so grateful to you for sharing this info with me. It makes me feel like maybe I can get one step closer to help save my mothers life with suggesting these things that are being done to you with her docs. I hope the liver radiation goes so well for you. Please keep me informed. Good luck!! Holly
Holly
Saw Dr Vora today . He showed me the CT scan of the liver. Spot is about 1/4 the size it was. Tomorrow I go to the Phoenix campus of Mayo AZ to have a marker put in my liver. It was explained to me as a procedure similar to the biopsy but they will be placing a target marker in the liver. Said it was like a tiny spring or slinky. Explained that the liver is hard to radiate because it moves when you breathe, being so close to the diaphragm. They can get around this in two ways. One is to weight the area down. The other is to coordinate the machine to go off and on with your breathing.
The liver radiation will take about 45 minutes for each treatment and the will be 3 treatments total. They will be done at the same time I am having my PCI.
The liver radiation is a pretty new treatment. Cutting edge. I sure hope it goes well. Maybe if you have good luck wiith chemo on the lung problems and nothing else comes up they will reconsider radiating the liver at that time.
I will keep you informed on the progress. If it works out maybe it will become standard for liver mets in the future.
Keeping you in my prayers, MJ
Gazelle,
Thank you again for your advice and help. My moms cancer started in her lung and spread to her lymph in her chest. We aren't even 100% sure it's in the liver but the ct scan showed a few "spots" that are very suspicious. Her onc said that if she is extensive (in the liver) they never do radiation on those patients. I just don't like hearing that almost nothing can be done. She's young and fairly healthy cancer aside. I will keep you posted as to what the Mayo rochester can do for her. Thanks for everything! Holly
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