Please help me - 1293215

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JimC
Angela,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

angelapassmore8151
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Roger that Jim. Thank you for

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

angelapassmore8151
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Guys

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

angelapassmore8151
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When lung cancer has spread

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

JimC
Hi Angela,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

greeneyes
Can one get SABR even though.

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

angelapassmore8151
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Morning Jim and thanks!

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

JimC
Hi Liz,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

JimC
Hi Angela,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

angelapassmore8151
angelapassmore8151's picture
Hi Guys,

Hi Guys,

Seen the Oncologist today and my mum has the EFGR mutation and first line is Afatinib. Anyone had any experience?

Lots of Love. Xx

JimC
Hi Angela,

Hi Angela,

It's good to hear that your mum has an EGFR mutation, which opens the door to a group of treatment choices in addition to standard chemo, and that a treatment plan is now in place. Dr. West wrote this post in which he discussed trial evidence pointing to somewhat better results with afatinib as opposed to gefitinb, another EGFR inhibitor.

Good luck with treatment.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

angelapassmore8151
angelapassmore8151's picture
Thanks Jim!

Thanks Jim!

Apologies for the delay I completely forgot my password. Just reset it now!

Is everything ok with you guys? Janine and Judy?

My mum has been taking Afatinib since Thursday. I'll read your post now Jim thanks for linking it. Xx

cards7up
Morning! I'm doing fine

Morning! I'm doing fine myself. I go for my follow-up CT scan on the 13th. Will have results same day. I've been NED almost 4 years now, so we'll see how this goes. Wishing your Mom the best and hope she does wel on Afatinib. Take care, Judy

angelapassmore8151
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So good to hear from you Judy

So good to hear from you Judy! I thought I found you on Facebook and sent a message but I'm not sure if it was actually you!

That's great you get your results the same day! I wanted to thank you and Janine and Jim for helping me with all of this and for educating me. I am no expert but you guys taught me enough to be able to go to my mums appointments and understand what was being said, I recognised terms, drug names and uses and that is actually all down to the three of you. Janine thank you also for recommending LUNGevity those guys have been brill also. Xx

catdander
Hi Angela,

Hi Angela,

I'm glad you can go to your mom's appointments and get the gist. I think we all know the feeling and the reason we do this.

I hope your mom does well on afatinib and keeps side effects at bay.

Do something nice for yourself.
Janine

angelapassmore8151
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Thanks Janine, I don't know

Thanks Janine, I don't know what to do with myself. Sometimes I think a mallet to the head would be a good idea! Xx

angelapassmore8151
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Have any of you heard of

Have any of you heard of experiences with Afatinib causing palpitations? Not all the time. Xx

catdander
From the Gilotrif website

From the Gilotrif website/side effects it states to let your doctor know if palpitations occur.

"Heart problems. Tell your doctor right away if you have any symptoms of a heart problem which may include:
new or worsening shortness of breath while at rest or with activity
cough
tiredness
swelling of your ankles, feet, or legs
feeling that your heart is pounding or racing (palpitations)",
http://www.gilotrif.com/taking-gilotrif/side-effects-overview.html?sitel...

Keep us posted,
Janine

angelapassmore8151
angelapassmore8151's picture
Thanks Janine. My mum seen

Thanks Janine. My mum seen the nurse at the clinic and got some lotions for her rash from Afatinib. Does your husband have a mutation? Xx

Judy, Hope everything went well at your scan. Xx

catdander
Hi Angela,

Hi Angela,

Sorry for late reply. My husband was never tested for mutation but it's very unlikely he would have a mutation since his nsclc was squamous cell. He took tarceva because he and his onc didn't want a break but he needed something less toxic. Since tarceva has shown to have a small benefit for some without mutation he gave it a try.

How are you and how's your mom?

Janine

angelapassmore8151
angelapassmore8151's picture
Hi janine,

Hi janine,

Thank you that makes sense. My mum is ok. She is still 10 stone, still doing everything she was before this diagnosis happened the cream for her face and lotion for her scalp is helping. Certainly it's not as firey as it was although it does bother her as she always had beautiful clear skin.

Immodium helps the other side effect and the clinic asked her to cut out fruit and veg this week to see if it helps. I would say it helps very slightly as she still gets it even leaving fruit etc out her diet.

She is taking shots (shot glass) of wheatgrass and just a multivitamin, trying to keep her immune system good.

I am still living every day feeling scared and on edge but at least I am understanding a bit more.

Lots of Love
Angela xx

catdander
It's great to hear she's

It's great to hear she's feeling well. If the side effects become a burden it's quite appropriate to try decreasing the dose. For many people who are very sensitive to the drug they are able to maintain efficacy while decreasing the dose thereby decreasing side effects.

Hang in there! :)
Janine

angelapassmore8151
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Thanks Janine, My mum coming

Thanks Janine, My mum coming off the fruit and veg for a week actually didn't make any difference in the way of her big D side effect and today she felt a bit nauseous...

Maybe they will need to adjust her dose to 30mg. She's back at the clinic on Monday and we will also see her Oncologist then too.

I asked at the clinic at the start of this week how often they will scan her and they said every 8 weeks for the first year. I just want to check that is normal?

Happy Thanksgiving to you. Xx

JimC
Hi Angela,

Hi Angela,

Eight weeks is a pretty typical interval for follow-up scans. There's an understandable desire to know what's going on at every moment, but if you scan significantly more often, it becomes difficult to determine whether there is actual growth or shrinkage, as a very small change from one scan to the next is usually not clinically significant.

Happy Thanksgiving to you and yours.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

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