Tylalla

What great news Vicky! I hope it continues and you remain NED for years to come! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Dear Kaly. Im so sorry to hear your brothers condition has gotten worse. I do know the fight is hard and it can completely wear you out. As far as squamous cell and chemo, it can work. My first diagnosis was taken care of with Cisplatin and Etoposide, along with radiation. Im sorry his oncologist won't consider radiation, at least for pain control. My prayers are with you both. Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Hi Charlotte, There are a lot of friendly and knowledgeable people here to answer your questions, talk when you need to, or just lend a shoulder to cry on. I don't have any knowledge of small cell lung cancer., mine is non-small cell. Im sure someone here can help you out. I just wanted to say welcome! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Hi Kaly, Has he looked in to drinking some Ensure? It will provide needed nutrients. Its not bad when mixed with ice cream into a shake. The ice cream would also provide extra calories and nutrients. It might be easier swallowing a shake, and would help stop the weight loss. Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Hello Dawn, Tom's answer is spot on, and yes, we've all "been there". The waiting is almost worse than the cancer. Try and find some ways to take your mind off the waiting and enjoy some quality time with your dad. Read, listen to music, try some puzzle books or take up a new hobby. Something to get your mind fixated on something other than the waiting. I hope your dad fares well in his treatments, and you find some peace of mind. Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Hello Missy, (that was my childhood nickname) I'm so sorry you for your loss and for you having to be here in the first place. I'm also sorry to hear how your Mom's cancer has spread. I have been on Keytruda, and had really mild side effects. I experienced some fatigue and some mild nausea. That was about it. It didn't work for me and now I'm in a clinical trial. I've also been on Opdivo, and had some fatigue with that as well. I also developed neutropenia and got the Neulasta shot at first, then I was switched to the device which gave me the shot at home (or where ever I happened to be at the time). I experienced terrible join pain for several days after each injection, whether given at the Dr's office or at home. Claritin didn't help. It was miserable for 4 to 5 days. I was wrongly taken off the Opdivo and put on Tarceva. That's a whole different story. So, sadly I can't tell you if it worked for me or not. I hope it works out well for your mom! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

I've had both Opdivo and Keytruda. Opdivo first, which I really had no side effects with except neutropenia, which is a severe drop in white blood cells. I started getting a shot (Neulasta) and that took care of it. My oncologist made a wrong decision based on Foundation One gene testing and put me on Tarceva ( which was just horrid and another whole story on its own) I changed Oncologists and my treatment changed for the better. Now, Keytruda. After my oncologist switch, I was tested for PDL-1 and found to be quite high in suppression. I don't remember the number, but I was put on Keytruda. Unfortunately it wasn't working for me and I am now in a clinical trial. Side effects of both the Opdivo and Keytruda were very mild. Some nausea, some fatigue. That was really about it, with the exception of the neutropenia, which was controlled with a shot after each treatment. I hope you have little to no side effects and whichever medication they choose for you works well! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Thats wonderful and great news! I'm so happy for you! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

My radiation was given to a tumor on my lung. The tumor was inoperable. I had radiation 5 days a week for 6 weeks. I developed a "sunburn" type burn on my chest and my back, I also developed a burn on my esophagus and it was extremely painful to swallow for several weeks. That's when cold watermelon, cold applesauce, and popscicles became my diet. It wasn't terrible for me, and everything healed within a few weeks after radiation ended. Radiation is a lot more advanced than it used to be. I was marked so I could be put in the exact same position each time. The machine rotated around me, and was set to pinpoint accuracy so it would only radiate the tumor. Each visit was only 20 to 30 minutes long. The radiation was a lot kinder to me than chemo ever was! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

With my first diagnosis, I had chemo and radiation together. The chemo will make you tired. The radiation will add to that and make you feel wiped out. Pamper yourself, rest, relax, sleep when you need to. See if your cancer center participates in the Look Good, Feel Better event, sponsored by the American Cancer Society. This is from their site: In a Look Good Feel Better session, trained volunteer cosmetologists teach women with cancer how to cope with skin changes and hair loss using cosmetics and skin care products donated by the cosmetic industry. or PBA a national organization that represents hairstylists wig experts estheticians makeup artists... which includes A detailed description and demonstration of the 12 step skin care and makeup program... Detailed skin care information How to makeup tips Wig information Pointers on head coverings etc. You can read more about it here: https://www.cancer.org/treatment/support-programs-and-services/look-good-feel-better.html It's a nice way to spend a couple hours, learn how to feel good about yourself again, and you get some free makeup! My biggest advice is to just listen to your body and rest when you need to, cry if you want to, and never lose your faith. Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Hi Betsy, Well on your tired days just pamper and baby yourself. You've earned it. And on the other days, celebrate but still be kind to your self. On your good days, celebrate by going and getting a milkshake. Everyone loves ice cream right? I hope you continue to improve and have more good days than tired days. Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Hi Nichole, I'm so sorry you are having to face this, especially at such young age. My heart goes out to you! Tom is right, you will find so much information here, and if you have a question don't be shy about asking! I don't know anything about your type of lung cancer or mutation, but I did get 4 treatments of Keytruda. The side effects for me were minimal, some fatigue, but unfortunately it didn't work for me. I hope it is successful for you! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Hi Betsy, Those steroids can be (pardon the pun) a real pain in the butt. It was the steroids I was given during chemo that triggered my diabetes. Before chemo I was fine. I think they were also responsible for the cataracts I developed, and the rise in my blood pressure. I just know that before chemo and steroids I was fine. After... I was a mess. lol Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

Thank you for your kind word for you Lauren and Katie. And Katie, I like your friend's wisdom about "borrowing trouble", and I will definitely keep that thought in mind. I'm on day 12 of the first 28 day cycle of the drug. 9 more days on the drug and I'm off for a week. I hope things continue to work out! Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

If you look, you can always find something to live for. You can always find support and encouragement from the people here. Whenever you are feeling low, we are here to lift you back up. Have you looked in to pain management? Ask your oncologist if they can refer you to a pain management specialist. You don't have to live with unmanaged pain. It can lead to unnecessary depression. Ask your doctor. Anyway, I'm here if you need someone. I hope you are feeling better soon! Blessings to you, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

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 Sent from my SAMSUNG-SM-G890A using Tapatalk

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 Sent from my SAMSUNG-SM-G890A using Tapatalk

New doctors! Sent from my SAMSUNG-SM-G890A using Tapatalk

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 Sent from my SAMSUNG-SM-G890A using Tapatalk

Hi Molly, I've heard of Gemsitabine. It's what my oncologist will be trying with me if I fail to get in to a clinical trial. It's not new, but I'm not sure how often it's used, or with what. Blessings, Michelle Sent from my SAMSUNG-SM-G890A using Tapatalk

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 Sent from my SAMSUNG-SM-G890A using Tapatalk

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 Sent from my SAMSUNG-SM-G890A using Tapatalk

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 Sent from my SAMSUNG-SM-G890A using Tapatalk

Here is what went on at my appointment today. The Dr reviewed my CT and it showed that the lung spots and lymph nodes haven't changed. That was the good news. The bad news is that the tumor on the kidney is bigger, the hip bone damage has increased and it appears that the tumor has started eating in to the muscle, which most lo likely explains the severe pain I have been having in my hip and tailbone. The damage to my spine explains the terrible nerve pain I have in my right leg. I'm going to get some palliative radiation done on my hip to hopefully help with the pain. Because the cancer shows progression, I have been taken off the Keytruda immunotherapy. We are now in the process of trying to get me accepted in to a clinical trial. I'm going to have to have another biopsy so more gene testing can be done, and it will be at least a few weeks before I will know if I am accepted or not. If I'm not accepted, there is still a regular chemotherapy drug I can try. I'm going to hope for the trial. I think it gives me more hope and options. Sent from my SAMSUNG-SM-G890A using Tapatalk

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 Sent from my SAMSUNG-SM-G890A using Tapatalk