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bestcare
@bestcare

Posts: 18
Joined: Apr 07, 2016

Non Small Cell Carcino Adenoma

Posted by @bestcare, Sep 3, 2016

in 2013 we discovered my cancer. so far I have had 3 surgeries. The last one showed metastisis. It has left the lft. lung. so far we are still waiting for 3 mos. to repeat the PET Scan. for more growth. I pray I am in good hands. Does this sound like the best way to go about my treatment. Just treating sxs. as they come. Monoclonal drugs won’t work with my cancer. So chemotherapy would have to be done. or Immuno or Intergrative or trial. Not sure I’m doing the right thing. Can anyone help me with this decision? Bestcare

Liked by joan47

REPLY

So very sorry to hear of your troubles.
While its wise of you to ask a community of other patients what their opinion of your treatment might be, if you are deeply questioning whether you are on the right track perhaps you should consider getting a second opinion from another specialist or clinic. Apparently the benefits of a second opinion might be in question but there also seems to be a chance that they can help in some cases. Here are Mayo’s guidelines for getting one should you decide to:

http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/cancer-treatment-second-opinion/bgp-20056385

Since the Mayo site recommends an NCI Treatment center for second opinions, here is the tool to find one:

http://www.cancer.gov/research/nci-role/cancer-centers/find

Advice and support from other patients and support groups like Connect is always useful, but take advantage of every tool at your disposal. So, here is the NCI Patient Version of treatments for your cancer. Stay optimistic. Its going to be alright.

http://www.cancer.gov/types/lung/patient/non-small-cell-lung-treatment-pdq

Hope this helps.

Hi Bestcare,
I see you have found out in the meantime that you have non-small cell lung cancer. That will help focus the treatment options specific to your type of lung cancer. I agree with @johnwburns. It is best to speak with your cancer care team about all options and/or seek a second opinion, and to use all the tools at your disposal to find out more.

You’ve mentioned that you are interested in integrative medicine. Did you know that each of the Mayo Clinic campuses has an Complementary and Integrative Medicine Program? Here’s some information about the Minnesota center http://mayocl.in/2caoWDb Complementary medicine complement conventional cancer care. Are you being treated at Mayo Clinic?

I meant to also tag fellow members, @shortshot80 @burrkay @merilee @mryzuch @amws, on this discussion about treatments option for non-small cell lung cancer.

I agree with Coleen…consult with your doctor. However do not delay!
I am sorry to hear about your troubles, but be brave and confront it head on! Get with a local support group if you can.
My wife had surgery for NSCLC at Mayo in Rochester in May, 2015…Dr Cassivi used the VATs surgical procedure to remove two lobes from her right lung.
She then followed with chemo at her option, as she was stage IIIa…finished the chemo (cisplatin cocktail) last September. Scan at Mayo in October looked good.
In April this year, she returned to Mayo and the scan showed possible metastasis…she was told to wait 3-4 months – then rescan. We went back in July and scans showed metastasis into the left lung. SCARRY!
Mayo re-staged her to stage IV, and she is now getting Opdivo immunotherapy locally. Our local cancer center has agreed to collaborate with Mayo.
She gets an infusion every 2 weeks…then after 4 infusions they will do another PET Scan and consult with Mayo as to her progress..
We were told the FDA requires the patient to have had Chemo as a first line treatment, then a recurrence in order to qualify for the Opdivo therapy.
So far the two Opdivo infusions have resulted in virtually no side effects! What a welcome relief as the chemo was brutal!
We were told the trials of Opdivo had results of 40% success with either tumor shrinkage or stabilization. They are about to have another release of Opdivo combined withe carboplatin and another drug…which the trials are showing even better results.
We are grateful for the excellent care at Mayo. We are optimistic that the excellent care, coupled with a great support group and lots of prayers going up
Will help us get through this with positive results.
Best of luck to you!

@colleenyoung

I meant to also tag fellow members, @shortshot80 @burrkay @merilee @mryzuch @amws, on this discussion about treatments option for non-small cell lung cancer.

Jump to this post

Just to clear things, I have two kinds of lung cancer.. Right lung is just
plain old lung cancer… Left lung is Mesothelioma that has
No cure…
Nancy

@burrkay

I agree with Coleen…consult with your doctor. However do not delay!
I am sorry to hear about your troubles, but be brave and confront it head on! Get with a local support group if you can.
My wife had surgery for NSCLC at Mayo in Rochester in May, 2015…Dr Cassivi used the VATs surgical procedure to remove two lobes from her right lung.
She then followed with chemo at her option, as she was stage IIIa…finished the chemo (cisplatin cocktail) last September. Scan at Mayo in October looked good.
In April this year, she returned to Mayo and the scan showed possible metastasis…she was told to wait 3-4 months – then rescan. We went back in July and scans showed metastasis into the left lung. SCARRY!
Mayo re-staged her to stage IV, and she is now getting Opdivo immunotherapy locally. Our local cancer center has agreed to collaborate with Mayo.
She gets an infusion every 2 weeks…then after 4 infusions they will do another PET Scan and consult with Mayo as to her progress..
We were told the FDA requires the patient to have had Chemo as a first line treatment, then a recurrence in order to qualify for the Opdivo therapy.
So far the two Opdivo infusions have resulted in virtually no side effects! What a welcome relief as the chemo was brutal!
We were told the trials of Opdivo had results of 40% success with either tumor shrinkage or stabilization. They are about to have another release of Opdivo combined withe carboplatin and another drug…which the trials are showing even better results.
We are grateful for the excellent care at Mayo. We are optimistic that the excellent care, coupled with a great support group and lots of prayers going up
Will help us get through this with positive results.
Best of luck to you!

Jump to this post

Thank you for your reply. I was told that Optivo was not an option for me or any of the monoclonal drugs. So its either chemo or nothing, or just treat the sxs. as they appear. So far, no sxs. Thank you again. Bestcare.

@colleenyoung

I meant to also tag fellow members, @shortshot80 @burrkay @merilee @mryzuch @amws, on this discussion about treatments option for non-small cell lung cancer.

Jump to this post

Nancy, do you know if the right lung is non-small cell lung cancer or small cell lung cancer?

@colleenyoung

I meant to also tag fellow members, @shortshot80 @burrkay @merilee @mryzuch @amws, on this discussion about treatments option for non-small cell lung cancer.

Jump to this post

Hi, All I know is that it is a “slow growing cancer” and nothing to worry about. Mesothelioma is in my left lung. Nancy

Jo

@colleenyoung

I meant to also tag fellow members, @shortshot80 @burrkay @merilee @mryzuch @amws, on this discussion about treatments option for non-small cell lung cancer.

Jump to this post

Hi Nancy- I just noticed you used the term adenoma, which is defined as “- Adenoma is a type of non-cancerous tumor or benign that may affect various organs. … The basic difference between a benign tumor and a cancer is its slower growth and lower capacity to spread. ..”
My wife had non small cell carcinoma, which is slow growing, but was not benign. Therefore, she had it surgically removed.
In your situation, you are correct in that the mesothelioma should be your main concern…although no known cure that I have heard of.
Have you inquired about clinical trials? The National Cancer Institute or perhaps some of the major clinics like Mayo, M. D. Anderson, Emory, etc, might offer something for you?? Lots of research is being done, I am sure

I’d strongly suggest that you further research or even contact Tuberous Sclerosis Alliance from what you’ve said. Adenoma Sabacum which I’ve had since 13 was diagnosed with a Woods Lamp as Tuberous Sclerosis. It travels and goes to major body organs and can also be seen as Ash Leaf Spots and Shagreen Patches around or at waist. TSC 1 and TSC 2 malfunction at time of conception is believed responsible as are family genetics. It also can be a carrier and slow growing cancer that is capable of mestasizing to other organs. Check it out more thoroughly to see other aspects.

irvkay31 Mentor

@joan47

Hi @joan47. Welcome to Connect. It looks like you tried to write a post, but the message is blank. I hope you’ll try again. We look forward to getting to know you.

@irvkay312

I’d strongly suggest that you further research or even contact Tuberous Sclerosis Alliance from what you’ve said. Adenoma Sabacum which I’ve had since 13 was diagnosed with a Woods Lamp as Tuberous Sclerosis. It travels and goes to major body organs and can also be seen as Ash Leaf Spots and Shagreen Patches around or at waist. TSC 1 and TSC 2 malfunction at time of conception is believed responsible as are family genetics. It also can be a carrier and slow growing cancer that is capable of mestasizing to other organs. Check it out more thoroughly to see other aspects.

irvkay31 Mentor

Jump to this post

Hi, thank you for the info, I have a cat scan sometime this month, and will also have a oncologist visit also. Will print your info and see what the doc says. Nancy

@johnwburns

So very sorry to hear of your troubles.
While its wise of you to ask a community of other patients what their opinion of your treatment might be, if you are deeply questioning whether you are on the right track perhaps you should consider getting a second opinion from another specialist or clinic. Apparently the benefits of a second opinion might be in question but there also seems to be a chance that they can help in some cases. Here are Mayo’s guidelines for getting one should you decide to:

http://www.mayoclinic.org/diseases-conditions/cancer/expert-blog/cancer-treatment-second-opinion/bgp-20056385

Since the Mayo site recommends an NCI Treatment center for second opinions, here is the tool to find one:

http://www.cancer.gov/research/nci-role/cancer-centers/find

Advice and support from other patients and support groups like Connect is always useful, but take advantage of every tool at your disposal. So, here is the NCI Patient Version of treatments for your cancer. Stay optimistic. Its going to be alright.

http://www.cancer.gov/types/lung/patient/non-small-cell-lung-treatment-pdq

Hope this helps.

Jump to this post

I went for a second opinion and I felt the Dr. hesitated on the decision to wait 3 mos. I was left with that feeling. It leaves doubt in my mind. Just not sure and feel uncomfortable now about the decision. So I’m going to write her and ask if this is the best way. thank you for your reply.

Bestcare

Hi Bestcare:
I have been thinking of you. I hope you are having a good weekend. You shared some great comments about your journey, and it would be great to hear from you again.
Linda

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