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Mentor

Small Cell Lung Cancer: Let's connect

Posted by Merry, Volunteer Mentor @merpreb, Jan 12, 2019

Most of the discussions about lung cancer has been about Non-small cell lung cancers. There are many sub-types of this that are included. But there is another type of lung cancer that needs to be discussed and that is Small Cell Lung Cancer. This aggressive form of lung cancer most commonly occurs in smokers. It usually starts in the breathing tubes (bronchi) and grows very quickly, creating large tumors and spreading (metastasizing) throughout the body.
Symptoms include bloody phlegm, cough, chest pain, and shortness of breath.
Treatment includes surgery (for small tumors) as well as chemotherapy, sometimes in combination with radiation therapy.
Lung cancers cells are sometimes classified by where they tend to grow.
There have been huge breakthroughs in lung cancer research of late.
Please join @margot69 and I in this new disussion.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

Mentor
Merry, Volunteer Mentor | @merpreb | Jan 22, 2019

yay @bluelagoon! That's just wonderful that your doctor was so receptive to making you feel so comfortable, answering all of your questions. When you get your tests results would you mind sharing them?

REPLY
1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Jan 23, 2019
In reply to @margot69 "Hi Merry, I might check on that but it has been years of this, many tests..." + (show)
@margot69

Hi Merry,
I might check on that but it has been years of this, many tests and many meds, there about 14 now that I can't take (why my doctor and myself are concerned about the Chemo). Can't take Nexium or Omeprazole. I have been in Ranitidine twice a day. I actually get up around 5-5:30, take two and go back to bed to try and settle my stomach before I get up. My GI Doctor at Stanford suggested Intry Iberogast, which is an herbal liquid I order on Amazon. That has seemed to help me the most and I now take it as needed. I have read the GI community is starting to prescribe it now. My GI Doctor here has given it to some of his patients. I have been on Gabapentin for years for my stomach. They actually prescribe it for neuropathy, which I developed and was on the ned, only me. Actually, had to see a Neurologist at Stanford because they couldn't figure that out either. Did punch biopsies and I have small fiber neuropathy, idiopathic, of course. I will make note of the FD Gard but kind of hate to rock the boat right now.

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Margot, how are you today? Have you found out any more about your chemo?

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lady1lake | @lady1lake | Jan 24, 2019

Today I received good news from my radiology oncologist about a Brain MRI that was performed last Tuesday. There are no metastatic signs. Thank God! Now scheduled for whole brain radiation starting next Monday. This was recommended by the oncologists at Mayo Clinic for preventative purposes. I will have 1 session each day for 10 days.

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1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Jan 24, 2019

@lady1lake – what wonderful news. You must feel so relieved! I hope that the radiation is successful as a preventive measure.

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1 reply
lady1lake | @lady1lake | Jan 24, 2019
In reply to @merpreb "@lady1lake - what wonderful news. You must feel so relieved! I hope that the radiation is..." + (show)
@merpreb

@lady1lake – what wonderful news. You must feel so relieved! I hope that the radiation is successful as a preventive measure.

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Still taking things one day at a time. Just glad to be able to go onto next step to surviving SCLC!

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1 reply
margot69 | @margot69 | Jan 24, 2019
In reply to @lady1lake "Today I received good news from my radiology oncologist about a Brain MRI that was performed..." + (show)
@lady1lake

Today I received good news from my radiology oncologist about a Brain MRI that was performed last Tuesday. There are no metastatic signs. Thank God! Now scheduled for whole brain radiation starting next Monday. This was recommended by the oncologists at Mayo Clinic for preventative purposes. I will have 1 session each day for 10 days.

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That's great news!!! My Onc at Stanford is not recommending that for me but maybe because of my age?

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margot69 | @margot69 | Jan 24, 2019

This gets more interesting. I am under the care of a local Onc. I did go to Stanford and saw Dr. Wakelee. She said she was going to present my case to the tumor board. I received this message from her yesterday.
,
We reviewed your case at our tumor board yesterday afternoon. We actually believe this is large cell neuroendocrine cancer instead of small cell neuroendocrine cancer. The treatment remains the same, but that explains why your cancer has been less aggressive than most small cell cancers. I would still support you getting the carboplatin/etoside and then considering potential radiation later if there are minimal sites of disease. I would NOT suggest the prophylactic brain radiation. The immune therapies (keytruda or opdivo) are options either way as we discussed, but the concern of worsening your underlying autoimmune disease are still there so we have to be careful. One can never predict time very accurately so remember the ranges we discussed. I hope all goes well.
Warm regards,

So, looks like a new diagnosis with really no new prognosis and this seems to be even a more rare type. Anyone heard of this? I have not had time to research.

I started my Chemo yesterday. By IV., first given Zofran with steroids then the Cisplatin then the Etopicide. Was there for about 5 hours. They just left the IV in. Went back today for the Zofran and Etopicide. I have been taking a Xanax before my appts. That only took a couple of hours. Was doing ok and had some lunch and lay diwn fir a bit. Now, I am not feeling so well and took a Tigan for nausea, no appetite for dinner. I have another treatment tomorrow then 3 weeks off. Only the second treatment and not feeling well. Anyone have tgese issues with this treatment? I have only just started.
Any feedback on her newest findings?
Thanks

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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 24, 2019
In reply to @margot69 "This gets more interesting. I am under the care of a local Onc. I did go..." + (show)
@margot69

This gets more interesting. I am under the care of a local Onc. I did go to Stanford and saw Dr. Wakelee. She said she was going to present my case to the tumor board. I received this message from her yesterday.
,
We reviewed your case at our tumor board yesterday afternoon. We actually believe this is large cell neuroendocrine cancer instead of small cell neuroendocrine cancer. The treatment remains the same, but that explains why your cancer has been less aggressive than most small cell cancers. I would still support you getting the carboplatin/etoside and then considering potential radiation later if there are minimal sites of disease. I would NOT suggest the prophylactic brain radiation. The immune therapies (keytruda or opdivo) are options either way as we discussed, but the concern of worsening your underlying autoimmune disease are still there so we have to be careful. One can never predict time very accurately so remember the ranges we discussed. I hope all goes well.
Warm regards,

So, looks like a new diagnosis with really no new prognosis and this seems to be even a more rare type. Anyone heard of this? I have not had time to research.

I started my Chemo yesterday. By IV., first given Zofran with steroids then the Cisplatin then the Etopicide. Was there for about 5 hours. They just left the IV in. Went back today for the Zofran and Etopicide. I have been taking a Xanax before my appts. That only took a couple of hours. Was doing ok and had some lunch and lay diwn fir a bit. Now, I am not feeling so well and took a Tigan for nausea, no appetite for dinner. I have another treatment tomorrow then 3 weeks off. Only the second treatment and not feeling well. Anyone have tgese issues with this treatment? I have only just started.
Any feedback on her newest findings?
Thanks

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Very interesting @margot69. Your doctor's note was very nicely written I must say. Neuroendocrine cancer or tumors are a category of their own and can appear in various parts of the body. There is a Neuroendocrine Tumor (NETs) group here on Connect: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I encourage you to introduce yourself to the NETs group here:
– Welcome to the NETs Group! Come say hi. https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

There are other members who have neuendocrine tumors of the lung and will share more with you.

I'm sorry to hear that you are feeling so poorly after chemo. Besides the chemo, it is such a long tiring day. I hope you're able to sleep okay. Thinking of you.

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bluelagoon | @bluelagoon | Jan 24, 2019
In reply to @merpreb "yay @bluelagoon! That's just wonderful that your doctor was so receptive to making you feel so..." + (show)
@merpreb

yay @bluelagoon! That's just wonderful that your doctor was so receptive to making you feel so comfortable, answering all of your questions. When you get your tests results would you mind sharing them?

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Merry, Not sure what you are looking for specifically? They did blood test and CT scan and there were no issues, so I'm good till next check up. Am I missing something?

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1 reply
Mentor
Merry, Volunteer Mentor | @merpreb | Jan 25, 2019
In reply to @bluelagoon "Merry, Not sure what you are looking for specifically? They did blood test and CT scan..." + (show)
@bluelagoon

Merry, Not sure what you are looking for specifically? They did blood test and CT scan and there were no issues, so I'm good till next check up. Am I missing something?

Jump to this post

@bluelagoon– Sorry no issues. Didn't mean to ask you this.

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