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Deciding on Treatment


SteveD

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After spending a week in the hospital with pneumonia in June, I was diagnosed in August with stage 3 lung cancer. I'm pushing 70 and I hear chemo and radition are quite brutal, with both short-term and long-term side effects. Aside from an occasional pang and pressure in the upperleft lung, I feel healthy, and that is one reason why I'm having trouble deciding whether to go ahead with treatment. The radiadion doctor says I have about a one in three chance, the chemo doctor says around 50% if I go through treatment now, and probably a zero chance in three months. Anyone who cares to share their experience with chemo and radiation, as mine will take seven weeks, would be greatly appreciated. I know a small chance of surviving is better than none, but with me it is a quality of life concern. Thank-you.

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Steve, I have Stage IIIB NSCLC and went through chemo and radiation and now am on a targeted therapy for my particular mutation. You can read my rather long story in my introduction. 

Quite frankly, the treatments were brutal. Radiation on my lymph nodes gave me severe esophagitis, which made swallowing extremely painful and I was easily subject to dehydration. The pain management doctor my oncologist recommended suddenly disappeared and I couldn't get control of the extreme pain. A month after treatments ended, I had to have emergency surgery for a perforated bowel (maybe caused by chemo, dexamethasone or dehydration). So I almost died, but I've come through the worst and am doing well almost 7 months later. 

I was healthy before treatments. If I had to do it over again today, I would but I'd get a good pain management doctor on my team beforehand and possibly a feeding tube once esophagitis symptoms started. 

No one ever said I have an X% chance of success. From the start, my medical oncologist decided on aggressive treatments and wants to fight this with all the tools he has. My scans keep showing positive treatment response. 

I feel like my case was unusual and was a failure on the part of my team (my radiology oncologist was sympathetic to my suffering but unhelpful). But I'm still here and feel like I've faced the worst and won. 

I hope I haven't scared you off. I actually think the treatments are worth it. 

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Steve,

My treatment consisted of surgery without chemo so I can't provide the help you're seeking, but I wanted to welcome you to the forum and tell you that you'll soon hear from many other regarding their experiences with all you are contemplating.

Lou

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Hello Steve.  I was born and raise in Boston where I trained to be an RN .  I was 50 when  I was diagnosed Stage 3 B .   That was in 1997

I started treatment with  2 chemo drugs and daily radiation.  It did shrink and I was able to have surgery followed more chemo.

Yes it was rough.  But I am glad I did it.  I have survived.   Please keep us posted on how you are doing.  By the way I just

had my 73 Birthday.  

Donna G

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Hi Steve ... Another Steve here.

I'm sorry you have lung cancer but you picked an excellent forum to be a part of. Forgive me if you have posted elsewhere but would you share what type of lung cancer you have? I typically think small cell lung cancer when I hear left lung and non-small cell when I hear right lung but this is not necessarily correct.

My wife was diagnosed stage IIIB small cell lung cancer back in late January ... She turned 63 soon after.

Steve

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Hi Steve,

Welcome.  Let me start by saying I’m sorry about your diagnosis.  You didn’t say what kind of chemo they are recommending, unless I missed it.  I was diagnosed with stage 3 squamous in August 2019.  I did 6 weeks of radiation (5 days week) with chemo Carboplatin/paclitaxel (1 day week).  It wasn’t pleasant.  I never had nausea.  I had muscle/joint aches and fatigue.  That seemed to last a few days after chemo.  I did have some esophagus issues near the end of the radiation cycle, but that was treated with medication.  I am having a recurrence and am on the same regimen of chemo drugs with the addition of Immunotherapy drug, Keytruda.  I am experiencing fatigue and bone pain.  It’s severe, but will keep on keeping on as I have chosen to fight.  My side effects at their worst last about 3 days.  I know there is an end to them and that helps to get through it.  
 

What type of cancer do you have?  I’m assuming surgery is not an option?  I’m also surprised your Dr is talking survival percentages  It’s a very personal decision whether to go through treatment, but I’m a betting person and from what I’ve heard your odds are good. 
 

Babs

 

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The only stats out there are for people diagnosed more than five years ago--not to mention the stats represent AVERAGES. There's no reason not to think you're going to be in the group that responds beautifully to treatment. I know a few people--some here on the forum--who are 15 years out from an advanced cancer diagnosis, and are doing just fine. So we aren't necessarily talking about adding a few short, miserable months to your life, but potentially a decade or more of good quality life.

You need a good cancer team--one that will explain your treatment options, the pros/cons of each, and strategies to address any side effects. I have Stage IV cancer, but only one distant metastasis--a tiny spot on my spine. So my doctors talked about the possibility of approaching it as a IIIb cancer and doing concurrent radiation and chemo. The downside was that the location of my tumor and cancerous lymph nodes was such that they all agreed it would be unnecessarily brutal on me. So instead we are doing chemo/immunotherapy first and then assess whether radiation would be of any help in addressing any cancer that's left. I start chemo next week. 

The treatment plan we rejected is considered "curative" (which is never a guarantee), while the one I'm doing is not considered "curative" but it doesn't mean that the cancer won't be entirely eliminated. The odds are always against us in this deal, but plenty of us are able to stay in the game for a very long time.

Remember, you can always make the decision to stop treatment later. 

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Thank you all for responding.

It's stage 3a squamous (sp?) near the brochial, upper airway with some lymph nodes involved toward the center. I just talked with the chemo doctor on Thursday,

as far as I can recall, it's Carboplatin/paclitaxel (1 day week) the same as Babs, with radiation every weekday for 6-7 weeks. They say there is one tumor 4x5 cm but the radiation can be expanded for the lymph nodes.

The radiologist as much as told me it would affect the esophagus and I would probably not be able to eat solid food at some point, and might need corrective surgery.

It is certainly not something I look forward to and yet, I'm told if it's not caught in time we are not talking "cure" anymore.

I have been attending Anti-Cancer Classes held by my former acupunture doctor who has helped me greatly over the last twenty years with joint pain. He started some "guinea-pig" classes about the time I met him and calls it Tong Ren. Now it is practiced all over the world. Yesterday I was sitting next to more than a few cancer survivors who were very encouraging about this non-conventional treatment, and it's free, funded only with voluntary contributions. 

My worry is the doctors say time is limited.

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Steve,

I was diagnosed Stage IIIB, non small cell lung cancer, squamous cell. We share a type and my treatment outcome resulted in nearly 16 years of extended life.

Lexie's view on survival statistics parallels mine; Donna G.'s treatment experience and outcome always fills me with hope. The question to be decided is palliative care proceeding or concurrent with hospice care with a life duration of say 6 to 12 months, or a significant life extension beyond that period. Only you can answer that question.

My nearly 16 years of extended life allowed me to experience my daughter's wedding, the birth of my granddaughter and numerous vacations to exotic places around the world. True, there was a bill to be paid for this extension. Here is my bill as an example of worst case problems. Your suggested first line treatments of chemo/radiation should not be anywhere as arduous as my treatment outcomes.

What is first line chemo/radiation like? This summarizes my experience with infused chemotherapy. In first line chemo/radiation treatment, radiation is the key component and chemo is more-than-likely given at a reduced strength. I didn't even lose my hair in first line treatment. My six weeks of conventional radiation was a piece of cake for the first 3 weeks. Then, each day's treatment sapped my energy making it hard to find the strength to walk from my car to the clinic. Also I experience a sunburn-like symptom on my chest and a dry, non productive cough. But these symptoms quickly resolved on completion of treatment. Most important, my first line treatment worked!

Much more important, immunotherapy is now a possible and very effective treatment given in combination with conventional chemotherapy or as a sole treatment. This type of therapy presumes your biopsy tissue sample is sent to a lab for determination of PD-1 or PD-L1 expression which makes possible the new and very effective immunotherapy either concurrent with or following first line treatment. Read about immunotherapy here. Ask you doctor if your biopsy sample was sent for laboratory analysis to determine immunotherapy suitability.

I wrote a book if you are interested in all the details of my extensive cancer treatments. The link and a short summary of my treatment experience is in the footnote to this post.

Stay the course.

Tom

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Hi Steve - 

Welcome to our forums. First, as others have mentioned, stats are just that: stats. They don't take your health or current treatment options into consideration. On top of that, no doctor can tell you how long you have. When I was first diagnosed, I panicked when I was told my 5 year survival odds were 18%. Once I read more about stats, Super Doc and I came to the agreement that stats are crap and I don't want to hear them.

I'm a stage IV survivor. I've had surgery, chemo (two different cycles), and radiation. I also had lymph node involvement which was tackled with radiation. I had some issues with the radiation but most of them resolved when the radiation ended. As for chemo, I've had cisplatin, alimta, carboplatin, and taxol. They each caused their own short-term and long-term effects but I had a great medical team that worked with me.

There's a lot to take in - information, decisions, etc. We're here for you.

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Wow, this is a lot to take in. So far I'm scheduled to start next Tuesday with radiation, Thursday (tenative) with chemo.

I'm glad I found this forum. It's exactly the kind of information I need. I'm sure no one looks forward to this treatment without trepidation.

Steve

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Hi Steve: Sorry to be late to the party but here is my story. I am 74 years old diagnosed with stage 3B NCLS. I di not have any mutations, My PDL1 is 0. I did not qualify for surgery or radiation. Yet I never lost hope and started on the triplet ( a combination of 2 chemos and immunotherapy).  I finished 3 cycles (3 infusions) and my oncologist was very happy with the results of my CT scans. The side effects were not pleasant after the first infusion but subsequent to the second and third one, the side effects become very manageable. Bottom line you never know what side effects you will have or don't have but being hopeful and fighting beats the alternative.

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hi Steve and welcome! You do have a lot of information to process. I'm going to add my two cents worth. I am 75 and a survivor of 3 unrelated cancers. My most recent was a stage 1 lung cancer for which I had only surgery.  At the age of 66, I had a stage 3 rare and aggressive gynecologic cancer.  I had a great big surgery (a week in the hospital) followed by 6 weeks of concurrent chemo/radiation similar to what's in your plan- mine was cisplatin during the radiation--followed by 3 cycles of carboplatin/taxoterre with no radiation. It was not a pleasant experience. The lower half of my torso was radiated, so I had no esophagus effects, but my digestive system acted up very badly during the chemo/radiation and I also had the usual chemo side effedts.  I have still have some long term side effects.

Nevertheless, my quality of life is good now, 9 years later, and I have no evidence of disease. I've been working off and on and traveling when I can-- can't now due to COVID.  I'm grateful to be alive and I would make the same treatment decisions again.  

The decision is yours, and we'll support you whatever you decide to do. I hope you decide for treatment and that yours is as successful as mine.

Bridget O

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17 hours ago, SteveD said:

Thank you all for responding.

It's stage 3a squamous (sp?) near the brochial, upper airway with some lymph nodes involved toward the center. I just talked with the chemo doctor on Thursday,

as far as I can recall, it's Carboplatin/paclitaxel (1 day week) the same as Babs, with radiation every weekday for 6-7 weeks. They say there is one tumor 4x5 cm but the radiation can be expanded for the lymph nodes.

The radiologist as much as told me it would affect the esophagus and I would probably not be able to eat solid food at some point, and might need corrective surgery.

It is certainly not something I look forward to and yet, I'm told if it's not caught in time we are not talking "cure" anymore.

I have been attending Anti-Cancer Classes held by my former acupunture doctor who has helped me greatly over the last twenty years with joint pain. He started some "guinea-pig" classes about the time I met him and calls it Tong Ren. Now it is practiced all over the world. Yesterday I was sitting next to more than a few cancer survivors who were very encouraging about this non-conventional treatment, and it's free, funded only with voluntary contributions. 

My worry is the doctors say time is limited.

Steve - Your treatment regimen they are recommending is the exact same as I went through.  I had some joint muscle aches, basically flu like symptoms for about 3 days after my infusion.  I never had any esophagus issues from the radiation until about the last week and a couple weeks after, but medication helped tremendously.  I never had a feeding tube.  My mass was 6.5 x 5.4 cm. In the mediastinum so surgery was not an option.  I then went on immunotherapy for every 2 weeks for 8 months until a recurrence in August and am back on the Carbo/taxol with Keytruda every 3 weeks.  

I hope you decide to fight like many others have, as I have.  There are many success stories here and you can always stop if you feel you have to.  Keep us posted,

Babs
 

 

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Hi Babs: You are an inspiration to many of us. I admire your courage and fighting spirit. I want to verify that the  mass you had was 6.5 x 5.4 cm and not   6.5 x 5.4 mm. The reason I ask because mine was the same size in cm so it will be a boost to know a mass that size can be obliterated. 

GaruG

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Gary, 

Thanks. Yes I am talking cm, not mm!  Until my recurrence, my mass was scar tissue with no cancer cell activity.  In July there was an increase of less than 1 cm.  I then decided to go down to the Mayo Clinic for a second opinion and here I am. I’m sorry I should have looked back at your posts before I responded to see where you are at with your battle?  I guess I know that your mass is big like mine.  Please tell me if you’re comfortable, what treatments you are doing and what kind of Lung cancer you have?  Sounds like we have some things in common.  
 

Babs

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22 hours ago, GaryG said:

Hi Steve: Sorry to be late to the party but here is my story. I am 74 years old diagnosed with stage 3B NCLS. I di not have any mutations, My PDL1 is 0. I did not qualify for surgery or radiation. Yet I never lost hope and started on the triplet ( a combination of 2 chemos and immunotherapy).  I finished 3 cycles (3 infusions) and my oncologist was very happy with the results of my CT scans. The side effects were not pleasant after the first infusion but subsequent to the second and third one, the side effects become very manageable. Bottom line you never know what side effects you will have or don't have but being hopeful and fighting beats the alternative.

So see how easy this would have been for me to look back.  Didn’t have to go far.  Is yours squamous or adenocarcinoma?  Why could you not have radiation?  And what drugs exactly are you on?  Are you still on your treatments?  Sorry for all the questions.  
 

Babs

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Hey Gary,

I did go back and read your story.  I would be very optimistic if I were you.  I saw your posts about weight.  I have also struggled with weight.  Just had my 2nd treatment on Friday and have gained 7 lbs. I am NOT paying all that much attention to my sugar intake,  I am not diabetic nor have I had a real problem with my levels.  All I know is I feel SO much stronger with the extra weight.  I lost about 30 lbs. from when I probably started with symptoms to now.  I was drinking the protein shakes and have now started making my own with fresh berries, bananas, plain yogurt, whole milk and protein powder.  If I feel I need sugar I use honey.  No sugar.  Even have my husband drinking them! 
 

How are you feeling and dealing with the treatment?  I am hoping this go round is easier than #1 was.  Starting to feel the fatigue and muscle joint bone pain.  Sending good thoughts.....

Babs

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Babs:  My  biggest struggle was with loosing weight. I had pneumonia also and at one point I lost 65 pounds mostly muscles and I was not overweight.I have a hard time eating or drinking anything sweet except fruit despite not being diabetic. The doctor gave me medication to help  but it had to be discontinued because It gave me blood clots so now i am on blood thinner. Fortunately I am still eating well and my diet consists of proteins mainly beans and meats. I gained 16 pounds and managed to keep my weight stable. As you said gaining weight helps a lot.

I feel very good since I am lucky not having any cancer induced pain. My first infusion gave me a cough that won't quit for days. Luckily I found a way to beat it using breathing exercises.  I am eating well and sleeping well so far but the fatigue is still there especially when I do things in the Florida sun. The side effects appeared  less and less after every infusion and I hope it continues. Hopefully yours will go away also. My oncologist told me that he will discontinue Carboplatin  after the next infusion and continue with just Keytruda and Alitma for 2 weeks and then Keytruda from there on. That's the plan if my cancer keeps shrinking. I have a CT scan on the 8th of October and the results will dictate where we go from there.   The results of my CT scan will be posted  as usual under Triplet.I will be lying if I said I was not anxious and nervous but regardless I will never give up.

I wish you the best also and will be following your progress very closely.  Please don't ever hesitate to ask any questions since I am 2 cycles ahead of you.

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Thanks Gary!  We can rally each other!  That’s great about your weight gain.  I also am on blood thinners and have been for almost 1 year.  My next scan is October 20th after my 3rd treatment. I'll look forward to your results.  Positive thoughts coming your way....

Babs

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Gary & Babs - Our paths are staying close!  My scan will be on Oct 19th - we're delaying my 3rd infusion because my oncologist will be unavailable - doing rounds that week - and we didn't want to have scan results without being about to talk to him.  

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Ok now that makes sense about delaying the scan results. The norm is 2 infusions as I was told. I hope you have a very good result. That will be good news for all of us and gives hope to newer patients.

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That’s interesting about 2 or 3 treatments for the scan.  My Oncologist here said after 2 treatments and the Mayo Climic Oncologist said after 3 treatments.  I asked my Dr here why she said 2.  She said there are Pros and Cons to both.  If after 2 shows no progress they would probably stop but if they wait until 3 might be the extra time needed to show some progress.  She basically asked if I was willing to go for 3 and put up with the side effects if there was no progress.  My answer is “hell yes”.  I’m even saying that as I’m in the throes of severe leg pain and fatigue now from my treatment on Friday.  I feel like I’m making progress though.  My daily back pain in the mass area is gone and I’ve gained about 8 pounds since I started treatment.  
 

Good luck and good scans to us .........

 

Babs

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Hello All,

I've decided to go ahead with treatments. The experience several of you have shared convinced be that there is a chance to regain my health afterwards.

The radiation starts tomorrow and chemo on Thursday. After another talk with the chemo doctor I will know more about the exact drugs and immunotherapy 

that may be proposed later. Right now I'm just going to stay positive. Thank you all and I keep you posted.

 

 

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