Newbie

[PShsy]

Hi,

i’m Polly and am 45 years old. From NYC and was diagnosed with lung cancer stage IIIB Non small cell. Not very familiar with the treatment names or drugs. Docs talk to me I just kind of nod my head. Just finished 22 radiation treatments and two rounds of chemo. Tumor was found in my left lung but apparently some nodes were found in the right so I was not a candidate for surgery. Next up is immunotherapy. Physically I didn’t ha e many symptoms and the tumor was found by accident. Emotionally I’m a mess. I’m scared. Everyday I think about my mortality and having to leave my 27 yo daughter alone like my mom did to me at 17. I put a good face on for everybody else and laugh and crack jokes but when alone I cry a lot. 

[Rower Michelle]

Hi Polly,

Welcome, we’re sorry you have to be here.  For many of us this diagnosis comes as a crushing shock.  They’re really aren’t any words to describe it however we’ve all been there.  Lung cancer is very difficult to diagnosis, 90% are discovered at Stage IV.  An accidental finding at Stage III is pretty rare. That said, the treatment is designed with curative intent.  There is hope.  
 

From you post I’m guessing the immunotherapy therapy will be Imfinzi (Durvalumab).  There’s several people here with situations very similar to yours so it’s important to know you are not alone.  You will find a great source of support here.  

Emotional messiness comes with the territory, it happens to all of us. Let it all out, this is “normal”.  You will turn the corner as you learn how Immunotherapy can be very effective treatment. The survival statistics have increased exponentially over the last few years. 
 

Prolly you’ve been through the ringer, brighter days are coming.  Let us know how we can help so we can jump in.  
 

Michelle. 
 

 

[Opal]

Hi Polly,  I'm sorry to say welcome so I will just tell you you are not alone.  This April will be 2 years I was diagnosed 3a nsclc. I did 32 radiation and 2 rounds of chemo then 26 infusions of durvalumab. The immuno really wasnt that bad, at least not for me. I gained weight but I have to work on that. My find was incidental as well. I was in serious shock because I was in midst of being caregiver for my hubby who is stage 4 pancreatic. He is in his 3rd year of treatment.  We call him our miracle. Anyway, while it is SO scarey and difficult, try to think positive. It really does help. Just tell yourself you can do it, you are not alone. You can post here, cry and do what you have to. Just know there is always hope and miracles do happen. My doc, just like Michelle, said treating with curative intent and thats what I'm keeping in my head. 

Try not to take statistics to heart. Everyone is different and the Man upstairs has the final say. Sending hugs and prayers your way. 

Opal

[Tomm]

Hi Polly,

I'm sorry your here but glad you found us.  My stage 3a lung cancer was also found by accident 3 1/2 years ago. I got 30 rounds of radiation and 6 of chemo and became NED (no evidence of disease). I was NED for two years and then a recurrence made me stage  3C, I got more radiation and chemo and became NED again. Two years ago this month a new drug was release by the FDA for stage 3 lung cancer called Durvalumab. I started taking it 10 months ago and remain NED. This new immunotherapy appears to be having great success as the 1st new treatment in about 30-40 years. There is a forum with over 40 pages of people talking about their treatment with this..  https://forums.lungevity.org/forum/47-immunotherapy/   We post each infusion and talk about any side effects, we share how to help with these and what to watch for. Try and get someone to go to the doctor with you and take notes, I did.  Did you get biomarkers tested?  Ask your doctor what you PDl-1 expression is.  Try and think about being here now with your family, this is your reality .. the future will come later and you have a team to get you there. Please come join the other forum and share as we will too. Ask anything cancer related or not and someone may be able to help..

Good luck on your journey

Tomm

 

[DFK]

Hi Polly,

With very open arms, welcome. You've already made it thru your chemo and radiation so please congratulate yourself on that accomplishment. This nasty disease is a one day at a time, one treatment at a time, one cry at a time deal. Put one foot in front of the other and just live your day to the best of your ability. If it involves crying in private, then cry all you want. There are no rules on how to emotionally react to such a devastating diagnosis. What I do want you to know is that Immunotherapy is now a standard of care with a curative intent. 
 

Please go to the Immunotherapy/Durvalumab LINK that Tomm provided and get to know us and our journey and our challenges. You are never alone on your journey.....we are here to carry you along as others have carried us. 
 

Share your journey with us and ask any questions you may have. We are here to support and help you to try and make sense of the physical aspects of this disease as well as the emotional messiness that follows. 

Warm hugs to you, hang in there Polly. I'm so happy you have reached out....what a brave woman you are.

Take care, DFK
 

 

 

[Grahame Jelley]

Hi Polly 

It appears I am in a similar position to you. Stage 3 B NSCLC. Left upper lobe lesion known for 10!years but never thought to be cancerous . Thought possible TB scar . Was present 10 years ago when I had chemo for testicular cancer . 2 years cough and slowly increasing breathlessness culminating in an acute chest pain. Thought was angina or heart attack but sailed through heart testing so repeated CT scan as nothing to see on Chest X-ray. Last scan 2014 post seminoma . PET scan showed lymph nodes left and right side so no surgery indicated. I am 61 years old living in New Zealand. I completed 30 days radiation, with two cycles of Etoposide and Cisplatin, on 13th January 2020. The course of treatment seemed more tolerable than the seminoma treatment 10 years ago. I am still in relatively good health despite all treatments apart from ongoing fatigue and breathlessness . I have tried to remain physically active and look for the positives and the humour in life. I have had 1 vitamin C infusion post radiation and take daily oral Vit C until start immunotherapy. Also taking daily mebendazole which has some evidence of benefit for cancer .  I meet with a new oncologist on Monday to start the process of Durvulamab immunotherapy. . Seems we may start our journey close together so it will be interesting to compare notes. I have a scheduled CT scan as part of the preparation for Durvulamab on Wednesday. I was not due a scan post radiation until March so this will be an interesting first look at whether there is any change from prior to radiation and chemo. 
 

happy to swop notes on the Durvulamab list as we progress. I have found the group chat and information really useful 

Grahame

[Barb1260]

Hi Polly. I was diagnosed December 2018 staged 3a. 30 radiation and 6 chemos. I’m going for the 20th infusion of Imfinzi Thursday. I still have bouts of crying, it’s totally normal. The mental stress of dealing with this can make the toughest person fall apart. Ask all the questions you need to. I’m sure someone will have the answer. 

[PShsy]

Oh my goodness. Thank you everyone. This battle is a tough one. I’m a pretty strong person but lc is overwhelming especially when one starts reading statistics. I am grateful that I found this forum and now have an arsenal of information at my fingers. 

Polly

[Barb1260]

Don’t read statistics, most are old and don’t relate to the latest treatments 

[DFK]

Yes Polly, this LC business brings the strongest to our knees. No doubt about that, but we stand up and begin anew. I'm still feeling my way around and found that taking notes, and recommendations from others allowed me to participate in my care while still living my life. I  have copious notes on different complementary medicines that I plan to follow up on. There is such a wealth of information that is so freely shared and I feel so darn fortunate. 

I'm just getting over the nastiest ever flu....humbling, but I know it will be in my rear mirror soon. Then onward and upward towards health. We have lots of exceptional role models here that will keep us on track.

Take care Polly, keep us posted on the Durvalumab site and welcome again. You and Grahame should be starting your immunotherapy pretty darn near at the same time, how nice to have a comrade in arms. DFK

 

 

 

[LouT]

Polly,

You're already getting good input from our Lungevity family, but I want to add (or repeat) a couple of thoughts for you.

o you are not alone...we've all gone through the stages you describe and understand just how scary, frustrating and draining hearing this diagnosis can be.  

o unless I missed it, you haven't mentioned if you've had any post-treatment scans at this point or when you may have them.  Instead of looking at outdated stats on the web it may be best to focus on the fact that you are going through your treatment without significant side effects and will depend on scans and ongoing tests to tell you where you are going.  It will take a lot of stress off you in the end and that would have to be a good thing for you.

o any time you can "live your life" all of us have had a real lesson in facing our mortality and I often hear (and believe) the fact that more time is not your ultimate goal, but living your life fully is.  Enjoy your daughter and family.  Make new memories every day.  There are things you don't control so don't obsess over them (especially if you are prone to "catastrophic thinking" like me) since you can't change them, but change the things you can (diet, sleep, relaxation, healthy living).  You'll feel better physically, emotionally and spiritually.

Keep us updated and feel free to ask any questions you may have...especially of your doctors.  I'm concerned that you've been knocked back on your heels and you may not  be participating as actively as you could in your treatment plan.  Ask any and all questions to your doctors...write them down if you need to but get answers for those things that frighten you; you may well hear answers that could soothe you.

We're all glad you're here, but sorry you had to come.  

Lou

[PShsy]

My next ct scan is scheduled for the 24th of this month. I’m told it’s a little early.. I just finished my last radiation 2/5. I’m a history teacher but am currently in a sabbatical so I’m home quite often. 

I do have some questions concerning some side effects of radiation. It hurts to swallow. I’m taking an oral suspension but is there something wlae that would help relieve the pain? 

Thank you all for wonderful and thoughtful responses. I am humbled and grateful. 

 

PS 

[Rower Michelle]

Hi Polly,

I’ve heard from others that Magic Mouthwash or a high grade of Manuka Honey (from New Zealand) can help with the swallowing.  
 

While you’re in sabbatical, depending on how your energy level is, are there free programs offered by your cancer clinic like yoga and Tai Chi?  These are two activities that reduce stress hormones, provide a structure and community where this new crazy life can start to get some balance.  I made a weekly calendar of wellness activities that helped me get my life back together.  Now I’m doing LiveStrong for free at the YMCA.  I was born and raised in Jersey whee my Mom is The Master of free stuff.  You might want to check out Mary’s Place down the Shore for a free restorative weekend.  
You’ve just met some really awesome people here.  We are family.  Hang on.  
Michelle 

[Tomm]

Quote

 

I second Rowers suggestion for Manuka honey, I used it and had no throat issues

Manuka Honey can  heal present ulcers and a sore throat. Patients can avoid a very painful experience with mouth and throat ulcers when the manuka honey is taken correctly. If you can't get Manuka honey and honey may help

[LouT]

I can attest to the Manuka Honey.  It’s more expensive but with every penny.  I had developed a chronic sore throat from gastritis and it healed the tissues and was a great relief. 
 

Good luck. 
 

Lou

[Opal]

Hi Polly, I can so well remember how much it hurt to swallow after the radiation. My discomfort started in the final 2 weeks of RAD and it felt like razor blades. I didn't learn of Manuka until later in the game so never tried it. I did try using the Magic Mouthwash, but really it gagged me and I would not say it was a big help for me. Crazy as it sounds, I got Equate or Walmart brand liquid cherry antacid, kept it in the fridge and would use it before eating. I did only eat soft foods for a short time. Even baby food now and then. Those Ramen noodle soups were tops on my list. Loaded with sodium but it was tasty and didn't hurt going down. As was jello and mashed potatoes, or sweet potatoes for that "other" problem.   Also doc said drink milkshakes. No problem there. Oh is that why I gained all this weight. Not really, I didn't do that very long. My pain finally did subside and I was back to eating mostly everything. However, I did realize I had to take smaller bites and eat slower and chew a bit longer but I'm back to normal me.

Good luck and remember this too will probably pass. 

Opal

[Tom Galli]

Polly,

Radiation and a sore throat, I do remember that problem. Like others, the "magic mouthwash" proscribed by the doc didn't work for me. I didn't try the honey because my radiation treatment was in 2004, well before a forum like this existed to communicate means and methods. My GP suggested albuterol administered by a nebulizer that his clinic lent me. That didn't work either.

The problem is different for each of us depending on the amount of the trachea exposed to the radiation, and my irritation progressed as I went deeper into treatment. I lived on Halls Cough Drops. Supplementing the drops, in the evening before bed, was a shot of cognac that I sipped. I'm not sure of the therapeutic properties of the cognac but it did help me sleep.

I also had to limit my talking and practiced shallow breathing. I found taking steaming showers helpful in soothing my throat tissues. My wife also hooked up a humidifier for the bedroom and this had two benefits. It removed the dust from the bedroom---the water vapor attracted the dust which came out of suspension---and the dust was an irritant and the increased humidity soothed my sensitive throat tissues.  If you use a humidifier, ensure it is filled with distilled water or else you'll wake up with a blanked of fine white dust all over the furniture close to the humidifier. 

All of the aforementioned helped but did not really arrest my throat discomfort. I started to improve about a week after completion of treatment and my only complaint now is the "alligator skin" radiation patch on my chest.

I do hope your symptoms improve.

Stay the course.

Tom

[PShsy]

I will try the honey and the antacids.  I've be living off mashed potatoes, ice cream and applesauce.  They're tasty but I miss real food and I like to eat.  

Thank you everyone for the sound advice.

 

PS

[DFK]

Hi Polly,

Just wondering how you're doing. Grahame got his first dose of Durvalumab today and I thought about you getting prepared for your immunotherapy soon.

Has your swallowing improved? 

I just went thru a rough patch of getting a head cold, then flu, then a tooth abscess which laid me out physically and did a job on my emotions....it can be so hard at times.

Keep us updated, you're never alone on this journey.

Take Care, DFK

[PShsy]

DFK,

Swallowing has improved. Used plain old honey for a couple of days. 

I hope you’re feeling better. I’ve been thru all three and know first hand the impact they have on the body and mind. 

Michelle, 

I made an appointment at Mary’s Place. They were so sweet and understanding over the phone. 

Grahame,

How was your first treatment? I’ve been told that are hardly any side effects... true or untrue? 

Best to everyone, 

Polly

[Rower Michelle]

Hi Polly,

I’m so glad you were able to reach out to Mary’s Place.  I thought it looked pretty cool on their website.  My Mom and I are thinking about doing a weekend together later this year.  Nice to hear from you today!

Michelle 

[DFK]

Polly,

Great on your swallowing improving with regular honey, in an ideal world, pain should always be non negotiable.

I am back to my normal self......rough past three weeks but forward and upward. Can't wait to get back into the swing of things. One more tooth needs to be addressed, then I am home free.....for now and that's all I can hope for today.

Grahame is posting on Durvalumab forum....please check it out. I'm sorry but I don't know how to creat a link to it.

Happy Valentines Day.

Good to hear from you, DFK