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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 diagnosed with SCLC in Nov 2008. A biopsy of the liver confirmed it had spread there so I am extensive. I went to Mayo Clinic in Rochester Mn as I had family there and was under the impression I was limited and would be offered radiation. When they determined it was also in my liver they offered chemo only.
I decided to continue Chemo in my home state of Arizona. My first appointment at Mayo Scottsdale was with Dr Helen Ross. The first thing she said to me was "I think you will hear something very different here than you did at Mayo Minnesota. I think we can beat this thing!"
That was the first hopeful l thing I heard. I was overjoyed to learn I would be given a chance. I have had 4 rounds of chemo so far with 15 rounds of twice daily radiation to the lymph nodes in my chest.
I had a CT scan Mar 27 and will be meeting with Dr Ross on Mon Apr 6th to go over the results thus far. Boy am I nervous!
I will post the results when I get them. Please don't give up. Get a second opinion. I will keep you in my prayers, please do the same for me, need all I can get :)
Opps forgot, YES I do also have emphysema.
My mom had radiation and had COPD Her lung capacity was only 20% and was able to tolerate the radiation I would get another opinion
There's a gal I correspond with with COPD and limited SCLC. Her doctors are having her do the radiation and chemo separately. Kathy
I have Ext.sclc and in several lymph nodes but no mets to my liver. I also have emphysema and was never told i couldnt have treatment. I realize the big difference here is mine hadnt gone to my liver but I still dont see why she cant have radiation.
robin
Can you tell me what chemo drug you will be on. Sending positive thoughts and hugs your way.
Sylvia
hi - my dad ed-sclc with mets to liver was not offered radiation to his chest . his first line chemo was etopiside and carboplatin - very good response. following 6 rounds of chemo we did pci (preventive for brain radiation). I wish someone would've offered us the chance to try the chest radiation but it was not. Sadly our 2nd & 3rd line chemos did not work and dad passed away late january. i would try anything if there is a chance it would work (also with a good quality of life). Wishing much success - and prayers coming your way.
sorry i forgot to add that dad suffered with copd for quite a while prior to his sclc diagnosis.
maria
Gazelle,
Thank you soooo much for responding. That gives me a little more hope. We are actually waiting for the doctors at the mayo rochester to get back to us for an appt and I am going to bring up what you wrote if they tell us the same thing. My mom needs that kind of reassurance from a doctor right now. Please let me know how things are going for you and I will keep you in my prayers. Good Luck!!
Sylvia,
Actually its my mom with sclc. She's on cycplastin and atopicide (spelling?)
lilsis
I get my results on monday and will let you know how it goes.
I have been very impressed with how far Mayo Scottsdale has been willing to go. I asked the radiologist if we do manage to send the lymph nodes into remission if it is possible to radiate the liver also. He answered affirmative. Said just in the last year they have made advances that would make that a possibility!
So far have had minimal side effects from the 4 chemo treatments (etopiside and carboplatin) low blood counts for which I needed a blood transfusion and a luenesta shot, fatigue, sob. Have 2 more to go.
Had a very sore throat from the radiation and needed fluids IV twice. Lost 18 lbs because of swallowing difficulties
But all in all am feeling pretty good right now. Keep up the hope and prayers.
I could not take the Cisplatin as I also have slight kidney problems due to diabetes, I understand that it is a bit stonger than the Carboplatin.
Wishing you well!
I KNEW IT!!!
There are some people being "allowed" radiation with EX SCLC.
Sometimes I think that the protocol for EX SCLC needs to be revisited. Not with the word "palliative" but with the term CURE. UGH! Pisses me off to no end. Sorry to vent...
YAY!!! Someone is getting therapy!
God Bless,
Anita
Gazelle,
Just wondering if you found out any news from your docs? My fingers are crossed!!
Holly (lilsis)
PS. I have an appt for my mom at the Mayo rochester on 4/20/09 and I am going to print out your post to show the doc if they say no radiation.
Holly,
Got good news! Dr Ross went over scan results with me and said everything was stable. The lymph nodes are all back to normal size and the liver spot is smaller.
I asked if they would be doing a PET scan to determine if anything was still cancerous and she said no, she does not do PET scans. I will be getting a CT scan every 6 weeks. Talked about seeing Dr Vora, my radiologist about PCI and possibly radiating the liver spot. He called to set up my appointment before we ever got home! Will be seeing him Weds. afternoon.
Dr Ross said we should be done with the PCI by mid May and we will continue with the every six week scans two or three times to see if I am in remission. If at that time nothing has changed I will be able to go for scans every three months.
The Dr I saw at Mayo Rochester was Dr Ronald Richardson. He was very nice, but only offered me chemo due to my liver spot. I am so glad Mayo Scottdale thought otherwise. Even if this does not work, at least I feel they are giving me every chance possible. God bless 'em!
Best wishes and lots of prayers to you and your precious Mom!
Opps almost forgot! Best news of the day! My next chemo session due to start tomorrow was cancelled. Dr Ross seems to feel the 4 I had did the trick, at least for now. The chemo was wreaking havoc on my blood and my veins were all getting bad! What a relief it is :)
Gazelle,
That is such good news and it keeps my spirits up to know that there is hope!! I was wondering if you could tell me how your lung function was before you were diagnosed. My mom has had mild shortness of breath for quite a few years but it has never been as bad as it is now and the docs are blaming it on the COPD she's had for years but we thing it is mostly the tumor. Me and my sister are concerned because they don't really want to do radiation because of her lung function. Also if you don't mind could you tell me after what round of chemo did you start the radiation? My mom is going into round 2 next tuesday and the rad onc said he would re eval her in 3 months when chemo is done and we don't want to wait that long. I am wondering if I should call scottsdale to see if I can get her in for an appt. We are going to the Mayo rochester on April 20 but we are really to travel for treatment. How long did it take you to get in to the doc there? Do you think I should call? I could wait and see what rochester has to say too. Thank you soooooo much for all your advice and help. I am praying for you daily and I know this is a disease that can be beat so that's why I have to fight so hard for my mom. Thanks again, Holly
Holly
My lung function was not that great. I had NSCLS in Jan 2006. My FEV was only 56 then. I had a wedge resection done at Mayo Rochester. They got it all, no chemo etc. that time. But as the resection was in the good part of my right lung (my emphysema is mostly in the tops of my lungs) I did lose even more lung function and have been on 2 lpm of oxygen since that time.
Now with the SCLC (nice luck huh?) Even with the diminished lung function radiation was still "a go". I received the radiation concurrent with my third chemo. I was told it was proven much more effective to do at the same time as the chemo.
As I said before when I made the appointment at Mayo Rochester it was mostly because I am from the twin cities area originally and have 2 sisters and a son there. I was told SCLC was limited to the lymph nodes of the right lung. Though the PET lit up in the liver the was a "shadyness" there, a spot they called it. Were not sure it was cancer til the biopsy. That changed everything at Rochester! I had planned on the radiation and looked into staying at Hope House (cancer patients getting treatment at Mayo stay free courtesy of the Am. Cancer Soc.)
I finished my second chemo at Rochester because Scottsdale could not get me in right away. Rochester transfered my info to Scottsdale as the are connected through computer. They had all my info and hit the ground running.
I don't know if it would help to call Scottsdale as I really don't know what criteria was used to determine my treatment. I would think If you explained the situation of your mother and asked a lot of questions It may help you decide. I do feel that second and even third opinions are of great value. It is extremely important that you have confidence in your Doctors and treatment plan.
Holly
One difference may be that my SCLS appears to have started in the lymph nodes and spread to the liver. The primary is in the nodes. Lungs are clear. I believe that radiation has to over all the cancer in one "window". Thus if there is a tumor elsewhere in the lung as a primary it may not be possible to radiate.
Your Mom IS on the best platinum based chemo available for SCLC and it is very effective in beating it back. 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
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
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