Please help me

This topic contains 72 replies, has 5 voices, and was last updated by catdander forum moderator catdander forum moderator 1 day, 8 hours ago.

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October 11, 2017 at 6:18 pm  #1293308    
catdander forum moderator
catdander forum moderator

I understand and wish I could say or do something that would help. Lungevity is a really helpful lung cancer support forum where people help each other navigate the emotional battlefield of cancer care. And we are here for all the support we have to offer. Please keep us posted. You’re in my thoughts.

Janine

October 12, 2017 at 1:43 pm  #1293312    

angelapassmore8151

Thanks so much Janine. Xx

Do you know if Adenocarcinoma responds good to anything?

October 13, 2017 at 6:37 am  #1293314    
JimC Forum Moderator
JimC Forum Moderator

Hi Angela,

Yes, adenocarcinoma of the lungs does respond to a variety of treatments, and over the past several years more options have become available. Do you know if enough tissue was collected to test the cancer cells for targetable mutations? When the presence of mutations such as EGFR, ALK or ROS1 are detected, there are specific targeted therapies which can be used, in addition to standard chemotherapy and immunotherapy.

I agree with Janine that a second opinion is a good choice, especially at this point when treatment decisions are being made.

I understand how difficult this time is for you; it’s a lot to take in very suddenly. Most people find that they start to feel a bit better once a treatment plan is in place and you feel as though finally something is being done about the problem.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 13, 2017 at 6:37 am  #1293315    

angelapassmore8151

Hi Janine,

Thank you for sharing Lungevity with me. Xx

October 13, 2017 at 6:46 am  #1293316    

angelapassmore8151

Hi Jim,

They are testing for 3 mutations but it was EGFR, ALK and PD-1 the specialist said. I am hoping the Oncologist tells us more on 23rd. Then I’ll get a second opinion.

Can I ask you something?

Can Chemotherapy kill cancer in Mediastinum lymph nodes?

October 13, 2017 at 7:30 am  #1293318    
JimC Forum Moderator
JimC Forum Moderator

Angela,

Yes, it can. Chemotherapy is a systemic treatment, which means it can kill cancer cells throughout the body.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 13, 2017 at 11:39 am  #1293320    

angelapassmore8151

Thanks very much for confirming that to me Jim. Xx

October 16, 2017 at 6:36 am  #1293328    

angelapassmore8151

Hi Guys,

I have a question for you. After the CT Scan results the Dr said that probably a combo of Chemotherapy, Radiotherapy, surgery.

After Adenocarcinoma was confirmed on 11th the other Dr only mentioned Chemo. Do you know why Radiotherapy wouldn’t be included?

Also, Can someone clarify if Targeted Therapy and Immunotherapy are the same thing or seperate?

They are testing for EGFR,ALK and PDL1 and we see the oncologist 23rd. But I just wondered if it is Chemo, Targeted Therapy then Immunotherapy.

Xx

October 16, 2017 at 8:23 am  #1293329    
JimC Forum Moderator
JimC Forum Moderator

Hi Angela,

Usually, the recommended treatment is based on the staging of the cancer. For stage III lung cancer, chemotherapy, radiation and, in some instances, surgery. Stage IV treatment is typically limited to systemic treatments such as chemotherapy, targeted therapy or immunotherapy. The change in recommended treatment is most likely based on the presence of affected lymph nodes on both sides of the mediastinum, making the cancer stage IV, as Janine described earlier in this thread. The local therapies (surgery and radiation) aren’t used because killing cancer cells in one area of the body doesn’t solve the problem of the cancer cells having spread to the bloodstream and/or lymph system.

When specific mutations/genetic alterations, such as EGFR or ALK, are found in a patients cancer cells then targeted therapies are used. These are drugs which have been designed to attack cancer cells which have that specific genetic anomaly. Immunotherapies, on the other hand, seek to utilize the body’s own immune system to kill cancer cells. Cancer cells which express a high level of the protein PD-L1 tend to respond better to current immunotherapies, which is why your doctor is testing for it. Dr. West has a brief description of immunotherapy and PD-L1 here.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 16, 2017 at 8:34 am  #1293332    

angelapassmore8151

Than you Jim!

Is it either or treatment wise as in Chemotherapy, Targeted Therapy, Immunotherapy or are they used individually?

I’ll have a look at the link shortly. Xx

October 16, 2017 at 8:55 am  #1293333    
JimC Forum Moderator
JimC Forum Moderator

They tend to be used individually, although combinations are also possible.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 16, 2017 at 9:08 am  #1293334    
JimC Forum Moderator
JimC Forum Moderator

Angela,

I should also add that although it may be tempting to start by hitting the cancer with every available option, it is usually better to use them sequentially, getting the greatest benefit possible from each of them before moving on to the next option.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 16, 2017 at 3:44 pm  #1293338    

angelapassmore8151

Roger that Jim. Thank you for keeping me right. I can’t tell you how much I appreciate it. Xx

October 19, 2017 at 12:59 pm  #1293353    

angelapassmore8151

Guys

I’ve just read this article I found online. Is the Mediastinum node involvement the worst? My mum has Mediastinum and spleen involvement but I’ve seen and read people with a lot more mets than her and they are still positive.

I am getting quite nervous about our meeting with the oncologist on Monday because (in a nut shell) I don’t just want my mum treated like she’s terminal! She’s still fine. Other than emotional and stressed with all this you would never know!

Have a read, let me know your thoughts. Xx

October 19, 2017 at 1:06 pm  #1293355    

angelapassmore8151

When lung cancer has spread from an original tumor to other sites of the body, it is classified as metastatic (Stage IV), and the goal of treatment is to slow the cancer down with chemotherapy or radiation, but these treatments are unable to eradicate the cancer and survival is usually in the range of only a few months.

However, when there are only a few locations of metastatic lung cancer (called oligo-metastatic), some studies suggest that by removing or eradicating each of those cancer deposits with aggressive treatments such as surgery or high-dose, precise radiation called stereotactic ablative radiotherapy or SABR, the cancer may be controlled for a long period of time.

In order to further study the possible benefits of aggressive treatments in stage IV lung cancer, researchers completed this meta-analysis which evaluated data of 757 Stage IV NSCLC patients from 20 hospitals worldwide who had between one and five metastatic deposits that were removed surgically or eradicated with high-dose, precise radiotherapy. Patients in the study also had to have had aggressive treatment of their original lung tumor. The intent of the study was to determine whether long term survivors exist after aggressive treatment of oligo-metastases, and to propose a risk classification scheme that could be used to identify which stage IV patients are most likely to benefit from aggressive treatments.

The analysis determined that the factors that impacted overall survival of the patients included the timing of when the metastases appeared, that is, whether the metastases appeared at the same time as the original lung cancer (synchronous) vs. if they appeared after the original lung cancer (metachronous), whether lymph nodes in the chest were involved (N-stage), and the type of lung cancer (adenocarcinoma vs. other types).

Using these factors, the study identified three risk groups of patients 1) low risk patients (146), or patients who survived the longest, were those with metachro

October 19, 2017 at 1:50 pm  #1293356    
JimC Forum Moderator
JimC Forum Moderator

Hi Angela,

It’s true that in some situations, it may be appropriate to treat a lone (or perhaps a few) metastases with surgery or radiation. The concept of local treatment for oligometastases began with the idea of treating one or two areas of cancer spread, but in recent years some doctors have expanded its use to situations in which the distant metastases are greater in number. As Dr. West explains in this post:

“The term “oligometastatic” comes from the Greek root “oligo”, meaning few, along with metastases, and that fits when there is just one area of metastatic spread, or perhaps two. The problem is when local treatments are applied for 3 or 4 or more areas of disease. An isolated area of metastatic spread or progression may well represent a rogue area with its own biology, and there is an arguable reason to hope that we can resect or ablate that area and not have other areas of disease crop up. On the other hand, 5 areas of metastatic disease isn’t oligometastatic disease — it’s frankly metastatic disease, and it is unfathomably unlikely that the underlying cancer process can be controlled by just treating the areas you can see today.”

A retrospective meta-analysis such as the one you describe can provide some helpful information, but caution must be exercised in placing too much faith in the results. The most accurate way to test a treatment theory is via a randomized study of patients from a single population, one which is specifically designed to test that theory. Retrospective analyses combine results from studies using different populations and varying inclusion criteria and often lead to inaccurate assumptions.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 19, 2017 at 8:33 pm  #1293358    

greeneyes

Can one get SABR even though. Radiation was part of initial treatment immediately after diagnosis? Thanks, liz.

October 20, 2017 at 2:08 am  #1293359    

angelapassmore8151

Morning Jim and thanks!

Is my mum oligometastatic as she has Mediastinum and spleen involvement? It’s not multiple sites but still I wonder. Xx

October 20, 2017 at 8:07 am  #1293361    
JimC Forum Moderator
JimC Forum Moderator

Hi Liz,

Welcome to GRACE. As a general principle, irradiating the same spot is not preferred, but it would be up to your local doctors to evaluate the area to be radiated again and your particular circumstances. Dr. Loiselle describes the considerations to keep in mind when considering repeat radiation to the chest in this post.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

October 20, 2017 at 8:10 am  #1293362    
JimC Forum Moderator
JimC Forum Moderator

Hi Angela,

Keeping in mind the principles described by Dr. West, I wouldn’t expect your mom’s cancer to be considered oligometastatic if there are a number of lymph nodes involved on both sides of the mediastinum, plus the suspected metastasis in the spleen. But that’s a determination to be made by her own doctors, with full access to all of her medical information, including scans.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

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