Tylalla

Thank you so much Michelle.  I have a pain management Dr., and am on pain meds, because I also have Fibro and 5 ruptured discs in my back and migraines.  And I'm getting epidurals for my spine, but the steroids are giving me a lot of trouble. 
Thanks for your support!
 
Bless ~ Betsy

Hi, Michelle,
Thank you for the update! That is great news! Please continue to keep us posted. We're hoping for great scans next month!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Hi BBB,
I've never been given a timeline and I've never asked for one. I don't want to know, because if I did, I would focus in on that to the point of being obsessive, and would forget about just "living". Life is a beautiful thing, but it's entirely too short to be so concerned about when it's going to end. You miss out on the beauty and the little things that make life so enjoyable. Have you walked in the grass with bare feet recently? Smelled a freshly picked dandelion? Laid on a blanket in the yard and found the animals in the clouds? Closed your eyes, taken a deep breath, and just listen for a minute to all the sounds around you, and then open your eyes and write down everything you heard? Those were all things I used to do as a child, but I have rediscovered the joy of each game by doing them as an adult. Those are some of the "little things" that I would have forgotten about if I had been focused on a timeline. That's just my opinion on it all. My prayers are with you.

Blessings,
Michelle


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Hi BBB,
I've never been given a timeline and I've never asked for one. I don't want to know, because if I did, I would focus in on that to the point of being obsessive, and would forget about just "living". Life is a beautiful thing, but it's entirely too short to be so concerned about when it's going to end. You miss out on the beauty and the little things that make life so enjoyable. Have you walked in the grass with bare feet recently? Smelled a freshly picked dandelion? Laid on a blanket in the yard and found the animals in the clouds? Closed your eyes, taken a deep breath, and just listen for a minute to all the sounds around you, and then open your eyes and write down everything you heard? Those were all things I used to do as a child, but I have rediscovered the joy of each game by doing them as an adult. Those are some of the "little things" that I would have forgotten about if I had been focused on a timeline. That's just my opinion on it all. My prayers are with you.

Blessings,
Michelle


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Thanks Tylalla, that was beautiful!  I think I had already chosen to go, and learning that I wasn't going then kind of made me mad!  So I'm going to have to learn to live again.  I've also got tons of other health problems that cause me to be in a lot of pain and handicap me terribly.  But there are still things to live for!
 
Betsy

Hello all,
We'll it's been a while, and things have changed. I had 4 rounds of Keytruda. A scan following that showed my cancer was still progressing. It was decided a clinical trial was my next option. We decided that the MATCH trial was "the one", and I was scheduled for another biopsy.

During that time, the tumors on my pelvic bone and spine were causing unbearable pain, so some palliative radiation to the bones was set up. After the first session, I became very ill with nausea and vomiting. I ended up being hospitalized over the weekend for dehydration related to the vomiting.

I was released on Sunday and felt good. On Monday I started the radiation again. Tuesdays radiation had me feeling queasy. On Wednesday's appointment I was fighting to keep from vomiting. This time I was in for a week. The radiation oncologist insists that the radiation couldn't be the cause, but I am not convinced. I have not returned for the remaining sessions.

I have finally been "matched" in the clinical trial and started my new medication last week. So far there hasn't been any side effects, (other than fatigue, which could be caused by another med i take) and I feel great! I really hope the trial continues this way and the results are positive.

Even though I feel good and things seem to be on track, I keep waiting for the other shoe to drop. I have advanced lung cancer, I'm not supposed to feel this good. I'm taking a new med that hasn't been approved for my cancer. Why am I not suffering from side effects? That's what my mind tends to occupy it's self with lately. I still have a few more weeks before my first scan on the first of June, and hopefully it will be good news, and hopefully I will continue to feel good with no issues. I'm really tired of changing treatments.

Blessings to all
Michelle


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Hi BBB,
I've never been given a timeline and I've never asked for one. I don't want to know, because if I did, I would focus in on that to the point of being obsessive, and would forget about just "living". Life is a beautiful thing, but it's entirely too short to be so concerned about when it's going to end. You miss out on the beauty and the little things that make life so enjoyable. Have you walked in the grass with bare feet recently? Smelled a freshly picked dandelion? Laid on a blanket in the yard and found the animals in the clouds? Closed your eyes, taken a deep breath, and just listen for a minute to all the sounds around you, and then open your eyes and write down everything you heard? Those were all things I used to do as a child, but I have rediscovered the joy of each game by doing them as an adult. Those are some of the "little things" that I would have forgotten about if I had been focused on a timeline. That's just my opinion on it all. My prayers are with you.

Blessings,
Michelle


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BBB,
I certainly wouldn't say your are nitpicking, especially when it comes down to something as important as life.
I believe most doctors do they best they can explaining the statistics of life projection after one is diagnosed with cancer.  I also had one -- about 6 months -- and it was a good faith projection based upon what the doctor knew of my disease at the time.  But neither lung cancer nor life is constant.  Change, however, is constant and change makes statistical projection for life after cancer little more than a good faith educated guess.  I wrote more about the difficulty of using statistics to forecast life after cancer here.
My portion of wasted life involved fretting away the NED (no evidence of disease) periods during my treatment.  I should have been engaged doing things I enjoy.  After all, in choosing treatment, I chose life but I wasted the extra life I was granted.  I tell you this to suggest you not worry about how much time you have but rather worry about what you are going to do with the time you have.  That, in my opinion, is productive concern. 
Stay the course.
Tom

New doctors!

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Hi Karin,

I'm so sorry about your sister. My sympathies to you and your family.

It's great to hear your cancer was caught early and you are doing so well! With the loss of your sister, it going to be confusing for you internally to celebrate your victory, but do try to. It is a horrific disease, made even more so for you by the loss of a loved one.

Take your time and allow yourself to grieve completely for your sister. Remember her with smiles and love. Then take care of you.

Blessings,
Michelle


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Hi Lbelle,

Get a notebook, with pockets to keep paperwork in. Add paper to write down questions as you think of them to ask your doctor. (This is extremely helpful as sometimes a question will just come to you out of the blue, and if you're busy is easily forgotten. Write them down when you think of them). Keep copies of everything, as it's extremely helpful if you change doctors or seek a second opinion. Also, NEVER be afraid to seek another opinion. Most doctors even encourage it.

I research terms from the doctor and tests I don't understand. Learn as much as you can about what is going on in your body, and why this test or that procedure needs to be performed.

You should definitely try to get an earlier appointment by going through your PCP. Check with your insurance company for their policy about specialist visits. When it was first noticed that I had a mass on my lung, my PCP office got me in to see a pulmonologist within just a few days.

I know you are scared, and that's ok. It's a terrifying journey to begin. Do you have someone who can become what is called a caregiver? Basically it's someone who can go to the Dr with you and be a second set of ears, who can write down information for you and help you sort through appointments, financial stuff, insurance stuff, transportation to appointments, help at home with childcare while you go to appointments, etc? It can all get pretty overwhelming and some help is a huge relief.

Mostly, just try to take it all one day at a time. Concentrate on your children and home while you are waiting for appointments and results. Spend some time pampering yourself. You are important and you need to take care of you during all of this. Someone is always here to talk and try and answer questions.

Blessings to you,
Michelle


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Hi Vicky,

Don't pay attention to statistics. They are outdated and just numbers. You are NOT a number and you DON'T have an expiration date stamped on you. Try and let that stressor just fall to the back of your mind. (Yes, it's always going to be there, we all have it, but just do your best to keep it pushed away.)

Keep a notebook to take with you to appointments that has all your questions written down.. when ever you think of a question, write it down. It's easiest to keep a ring binder notebook with pockets so you can keep copies of Dr visits and test results. It's very beneficial in case you need to see a new dr or get a second opinion about anything. Plus, it helps you gain back some feeling of control over your situation.

Try to find ways to relax. Meditation helps. Try reading a book in a quiet place, or playing a game with a significant other or friend or family member. Things to help take your mind off the worry and the stress.

Do you have some one who can take the responsibility of your "caregiver"? This would be some one who would accompany you to appointments and be a second set of ears, writing things said down for you. (It can get really overwhelming and you will forget things said at Dr appòntments) Someone who can help you manage the financial side of treatment, and help you keep track of appointments and such.

Ask if the place you are receiving treatment from has any Patient Advocates (sometimes they are called other things), they are a great resource for help with financial management, finding resources for you in your community and state, help with managing appointments and other stuff like that. They are a big help when it comes to the tangled road that is cancer.

There are a lot of people here to help answer questions, lend a shoulder and just listen.

I wish you well,
Michelle


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Hi Vicky,

For sure the first thing is to knock all of those stats out of your head. Those numbers are always based on the prior decade... in other words, even in 2019, you really
Probably won't see any results newer than 2000-2009. Crazy, sad, but true. There were more things discovered in 2015 than in the previously mentioned decade! Much of the research done to make those discoveries was funded by the same amazing group that makes this site possible!! LUNGevity is FANTABULOUS!!

Holler out anytime around here! Someone will surely be around to holler back soon [emoji38]

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Hugs & prayers for the best trial available!

Having multiple types of cancer to fight must be hard on you. This part improving but this part growing would have had me going through many extras boxes of kleenex. I am glad you are able to forge ahead so well. There must be many prayers out there for you, pushing you onward & upward
[emoji5]
Please remember you can come here for anything. Basically conversation, prayers, hollering... you name it!

Take care,
Mary

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Tylalla, you helped more then you think. It helps to know people go through the same struggles and fears that I do. I'm still working on the hope part but I'm starting to get there. Thx Paula

Hi Paula,
When I was first diagnosed, I was in denial about the fact that I had cancer. Lung cancer, with an inoperable, incurable tumor. I went through chemo and radiation certain they were going to work, and they did. The tumor shrank to nothing and I was NED. For 7 months I was sure I was cured.

Then a routine CT in NOV OF 2015 showed a spot on my kidney. A CT, a PET, and a biopsy later I was told the cancer was back. Stage 4 metastatic. This time I was devastated and depression set in. It's been a tough battle with the depression and the treatment. I'm on my 4th type of treatment since the recurrence and, if I were to truly be honest with myself, I'm not too sure it's going to work.

All I'm hoping for right now is stability. After the devastation of the recurrence, I think I am too afraid to hope for NED again, because I don't think I would be able to handle yet another recurrence. Does that make any sense?

I still battle with depression, mainly because the cancer is in my pelvis, hip, and lower spine on my right side and it makes walking and standing for more than a few minutes quite painful. I am on morphine, and most of the pain is managed, but the nerve pain caused by the tumor on my spine is not. So I'm limited in what I can do, and that doesn't help with the depression. But I am doing my best to find the best each day has to offer and to look for reasons to smile.

I'm sorry I haven't been helpful at all. I just wanted to let you know I understand, and the fear, the uncertainty, the sadness, and the depression are all normal and ok. Some days, a little rain is going to fall. Just grab an umbrella and look for the rainbow. The sun will shine again.

Michelle


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Hi Vicky,

Don't pay attention to statistics. They are outdated and just numbers. You are NOT a number and you DON'T have an expiration date stamped on you. Try and let that stressor just fall to the back of your mind. (Yes, it's always going to be there, we all have it, but just do your best to keep it pushed away.)

Keep a notebook to take with you to appointments that has all your questions written down.. when ever you think of a question, write it down. It's easiest to keep a ring binder notebook with pockets so you can keep copies of Dr visits and test results. It's very beneficial in case you need to see a new dr or get a second opinion about anything. Plus, it helps you gain back some feeling of control over your situation.

Try to find ways to relax. Meditation helps. Try reading a book in a quiet place, or playing a game with a significant other or friend or family member. Things to help take your mind off the worry and the stress.

Do you have some one who can take the responsibility of your "caregiver"? This would be some one who would accompany you to appointments and be a second set of ears, writing things said down for you. (It can get really overwhelming and you will forget things said at Dr appòntments) Someone who can help you manage the financial side of treatment, and help you keep track of appointments and such.

Ask if the place you are receiving treatment from has any Patient Advocates (sometimes they are called other things), they are a great resource for help with financial management, finding resources for you in your community and state, help with managing appointments and other stuff like that. They are a big help when it comes to the tangled road that is cancer.

There are a lot of people here to help answer questions, lend a shoulder and just listen.

I wish you well,
Michelle


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Hi Lbelle,

Get a notebook, with pockets to keep paperwork in. Add paper to write down questions as you think of them to ask your doctor. (This is extremely helpful as sometimes a question will just come to you out of the blue, and if you're busy is easily forgotten. Write them down when you think of them). Keep copies of everything, as it's extremely helpful if you change doctors or seek a second opinion. Also, NEVER be afraid to seek another opinion. Most doctors even encourage it.

I research terms from the doctor and tests I don't understand. Learn as much as you can about what is going on in your body, and why this test or that procedure needs to be performed.

You should definitely try to get an earlier appointment by going through your PCP. Check with your insurance company for their policy about specialist visits. When it was first noticed that I had a mass on my lung, my PCP office got me in to see a pulmonologist within just a few days.

I know you are scared, and that's ok. It's a terrifying journey to begin. Do you have someone who can become what is called a caregiver? Basically it's someone who can go to the Dr with you and be a second set of ears, who can write down information for you and help you sort through appointments, financial stuff, insurance stuff, transportation to appointments, help at home with childcare while you go to appointments, etc? It can all get pretty overwhelming and some help is a huge relief.

Mostly, just try to take it all one day at a time. Concentrate on your children and home while you are waiting for appointments and results. Spend some time pampering yourself. You are important and you need to take care of you during all of this. Someone is always here to talk and try and answer questions.

Blessings to you,
Michelle


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Hi Lbelle,

Get a notebook, with pockets to keep paperwork in. Add paper to write down questions as you think of them to ask your doctor. (This is extremely helpful as sometimes a question will just come to you out of the blue, and if you're busy is easily forgotten. Write them down when you think of them). Keep copies of everything, as it's extremely helpful if you change doctors or seek a second opinion. Also, NEVER be afraid to seek another opinion. Most doctors even encourage it.

I research terms from the doctor and tests I don't understand. Learn as much as you can about what is going on in your body, and why this test or that procedure needs to be performed.

You should definitely try to get an earlier appointment by going through your PCP. Check with your insurance company for their policy about specialist visits. When it was first noticed that I had a mass on my lung, my PCP office got me in to see a pulmonologist within just a few days.

I know you are scared, and that's ok. It's a terrifying journey to begin. Do you have someone who can become what is called a caregiver? Basically it's someone who can go to the Dr with you and be a second set of ears, who can write down information for you and help you sort through appointments, financial stuff, insurance stuff, transportation to appointments, help at home with childcare while you go to appointments, etc? It can all get pretty overwhelming and some help is a huge relief.

Mostly, just try to take it all one day at a time. Concentrate on your children and home while you are waiting for appointments and results. Spend some time pampering yourself. You are important and you need to take care of you during all of this. Someone is always here to talk and try and answer questions.

Blessings to you,
Michelle


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Hi Tom

Thank you for the information on Zometa and I will write that down to ask about. I was getting Xgevia at the last clinic I was going to, but this center won't give that without clearance from a dentist and I cant afford that right now since i need a tooth pulled and some other work done.

I'm now going to Ohio State University Comprehensive Cancer Center- James Solove Research Institute (OSUCCC-James) It's a 3 1/2 hour drive one way for me, but I feel it's worth it. They are doing the Match trial there, and I'm really hoping I can qualify.

I do agree with you that it's interesting that the lung spots and lymph nodes have stayed the same. I'm wondering if they might be a different type of lung cancer than what metastasized to the kidney and bone. I did have 2 different types of lung cancer. The first diagnosis, which was taken care of with chemo and radiation, and several months later a secondary type of lung cancer tumor that showed up in my other lung and was surgically removed via a vats wedge resection. After that is when I was NED for 7 months. I had biopsies of the bone and kidney tumors and they were of the type of my first diagnosis. The lung spots have not been biopsied. It's something I may discuss further with my doctor.

Blessings to you,
Michelle


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Hi Paula,
When I was first diagnosed, I was in denial about the fact that I had cancer. Lung cancer, with an inoperable, incurable tumor. I went through chemo and radiation certain they were going to work, and they did. The tumor shrank to nothing and I was NED. For 7 months I was sure I was cured.

Then a routine CT in NOV OF 2015 showed a spot on my kidney. A CT, a PET, and a biopsy later I was told the cancer was back. Stage 4 metastatic. This time I was devastated and depression set in. It's been a tough battle with the depression and the treatment. I'm on my 4th type of treatment since the recurrence and, if I were to truly be honest with myself, I'm not too sure it's going to work.

All I'm hoping for right now is stability. After the devastation of the recurrence, I think I am too afraid to hope for NED again, because I don't think I would be able to handle yet another recurrence. Does that make any sense?

I still battle with depression, mainly because the cancer is in my pelvis, hip, and lower spine on my right side and it makes walking and standing for more than a few minutes quite painful. I am on morphine, and most of the pain is managed, but the nerve pain caused by the tumor on my spine is not. So I'm limited in what I can do, and that doesn't help with the depression. But I am doing my best to find the best each day has to offer and to look for reasons to smile.

I'm sorry I haven't been helpful at all. I just wanted to let you know I understand, and the fear, the uncertainty, the sadness, and the depression are all normal and ok. Some days, a little rain is going to fall. Just grab an umbrella and look for the rainbow. The sun will shine again.

Michelle


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Hi Paula,
When I was first diagnosed, I was in denial about the fact that I had cancer. Lung cancer, with an inoperable, incurable tumor. I went through chemo and radiation certain they were going to work, and they did. The tumor shrank to nothing and I was NED. For 7 months I was sure I was cured.

Then a routine CT in NOV OF 2015 showed a spot on my kidney. A CT, a PET, and a biopsy later I was told the cancer was back. Stage 4 metastatic. This time I was devastated and depression set in. It's been a tough battle with the depression and the treatment. I'm on my 4th type of treatment since the recurrence and, if I were to truly be honest with myself, I'm not too sure it's going to work.

All I'm hoping for right now is stability. After the devastation of the recurrence, I think I am too afraid to hope for NED again, because I don't think I would be able to handle yet another recurrence. Does that make any sense?

I still battle with depression, mainly because the cancer is in my pelvis, hip, and lower spine on my right side and it makes walking and standing for more than a few minutes quite painful. I am on morphine, and most of the pain is managed, but the nerve pain caused by the tumor on my spine is not. So I'm limited in what I can do, and that doesn't help with the depression. But I am doing my best to find the best each day has to offer and to look for reasons to smile.

I'm sorry I haven't been helpful at all. I just wanted to let you know I understand, and the fear, the uncertainty, the sadness, and the depression are all normal and ok. Some days, a little rain is going to fall. Just grab an umbrella and look for the rainbow. The sun will shine again.

Michelle


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Hello Barb,

I'm so sorry you are having to go through all of this. Cancer truly is a beast of a disease and it is cruel to everyone it hits, even caregivers. We all feel the need to "burst out" now and then and you definitely have the right to. This is all very stressful and can be difficult to comprehend. You might want to ask at your husbands place of treatment if they know of any support groups close by. It can really help to have someone to talk to who understands what you're going through.

We are always here to offer a sympathetic ear and advice and even a virtual hug. I pray you find some peace and comfort and your husband finds healing.

Stay in touch,
Michelle


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Hi Jerry,
Why can't you get Opdivo immunotherapy? There are no required genetic markers required for that therapy and it has a lot of good results. I think you need a second opinion.

Regards,
Michelle


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Hello. My name is Michelle and I am new to this forum. I am a 3 1/2 year survivor of non-small cell squamous cell lung cancer, and 1 year since recurrence at stage 4 with mets to my pelvic bone, spine, kidney, a couple lymph nodes, and 2 nodules in my lung again. I've been through chemo twice, radiation, surgery, Opdivo, Tarceva, and now getting ready to start Keytruda.
I take each day as it comes, thankful for another sunrise. I've lost my hair twice, (as well as my eyebrows and eyelashes), but I didn't let it get me down. I just learned how to crochet hats and waited for it to grow back! The side effects have been rough, and they have taken a lot out of me but with the help of a couple great caregivers (my husband and my son, and my puppy), I have managed.
I look forward to reading and sharing with others on the forum!
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