[Switching to chemotherapy from immunotherapy]

On 11/22/2022 at 9:30 AM, Tom Galli said:

Rosie,

I've been following your dialogue with other members. All have given superb suggestions about treatment and side effects. Like Lily, I also used Tramadol when I had adverse reactions with other narcotic pain meds with good results.

You mentioned your doctors pronounced your cancer incurable. And in a technical sense, they are right. Lung cancer is rarely cured; it is controlled. Mine has been "controlled" for so long now I have enjoyed more than 18 years of no evidence of disease. My medical oncologist pronounced me "cured" about 2 years ago, but I think he did so because he was retiring from practice and wanted to go our with a win. Here is some insight into what treatment outcomes mean in our disease. This information was provided by my medical oncologist, and I've found it helpful to explain what all these outcome characterizing words mean.

Advanced stage lung cancer is indeed difficult to eradicate because it has a nasty tendency to recur after successful treatment. That was my problem suffering 5 recurrences after treatment. The outcome term most of us pray for is no evidence of disease or NED. It means a radiologist can see nothing of interest on a scan, no tumors or nodules. It also indicates the course of treatment that produced NED was (is) successful. It does not, unfortunately, mean the disease won't return.

There are two ways to consider NED: a repeating hell or an opportunity to enjoy life. I spent my early NED years in contemplative misery worrying about recurrence and death and wasted a lot of time fretting about something I had no control over. I'd forgotten that none of us know when life will end and worrying about it is a grand waste of time.

You have the world to live for and living in a NED world can be grand indeed. Your attitude is something you can control, and you can choose to enjoy the life you have and live it in high style with your family soaking up love and joy. I wish you peace and joy and the happiest of Thanksgiving and Christmas surrounded by the love of your family.

Stay the course.

Tom

Hi Tom,

    Thank you so much for sharing your insight about my doctor’s comment at the hospital. I think that he really just meant to share it with the pulmonologist as a medical opinion to a colleague. He probably didn’t think the pulmonologist would tell me.

    I also agree with you about the meaning of “incurable” referring to lung cancer in its later stages. When I was at the hospital, my mind immediately translated the term to “terminal.” At the time I didn’t have anyone explain to me what it really meant in the technical sense. The high probability of recurrence really gives definition to the word. 
 

    It’s my hope to reach NED, like some of you. Right now, I’m living day by day and relishing each moment I have with my loved ones. This month I get to celebrate my birthday on Friday, December 9 and thankful I could reach the age of 48.  I don’t know if I’ll have more years, the thought of turning 50 sounds so amazing, although some people might balk at the very idea that implies aging. 
 

    Thank you for reminding me we can choose how to live by the attitude we pick to approach life and all it’s struggles. Regardless of how long I live, I will choose to see life as a gift and time as something so precious that I shouldn’t waste a minute of it by worrying about what the future holds.
 

     Again, I appreciate your encouragement and support. I hope you enjoy this season and have a blessed Christmas and New Year with  your family and friends. 
 

Rosie

[Switching to chemotherapy from immunotherapy]

On 11/22/2022 at 8:42 PM, Karen_L said:

If someone were to say I was terminal, I would feel like I’d been written off. I would also secretly toy with the idea of finding a hitman, but would settle for being angry. How dare that doctor sound so dismissive! Perhaps you’d consider finding an oncologist who would take a slightly different tack? The pulmonologist might be able to recommend someone, or perhaps you’re near a larger cancer center? You deserve better than to beg your own doctor to believe in your prospects. Please keep us posted. 

Hi Karen, 

   Your comment was so funny, it made my day. Over thanksgiving week I started looking into prospects and requested my primary care physician for referrals. Thank you for reminding me about keeping a positive outlook and sense of humor through all this. This cancer journey can seem like a horror and drama movie in one, that we forget we can add comedy into the mix. And though we can’t control what happens to us, or what other people say, we have total control of how we respond, even if sometimes it means saying “bye Felicia!” to your oncologist😆

Rosie

[Switching to chemotherapy from immunotherapy]

On 11/21/2022 at 4:38 PM, LilyMir said:

I am really sorry immuno made things worse for you Rosie. Did they do biomarker testing to check for actionable mutations? Are you being seen by a lung cancer specialist or a general oncologist? It makes my blood boil when heartless doctors tell their patients they are incurable or terminal from the get go. Can you get a second opinion? You should not be begging your doctors to care about you, they sound terrible at being human beings...

I am still so raw when it comes to my diagnosis and the fact that my boy is decades away from being a grown up man. One of the things I did that was helpful to me may surprise you: My husband and I made our wills, including guardians etc. Though many find this morbid, it gave me some control since most other things I had not much control over. After that was done, I started training myself to think of the now and here. I often fail, and occasionally break down sobbing, but I somehow always rebound. Every night when I tuck my kid in bed, I feel such sadness and worry for the future but push myself immediately to make loving memories. We tickle, hug, sing, tell stories and talk about our day. I often cry after he sleeps but then push myself out of the ditch and revert to hope. It is so tough, I know, but despair is not a good state to be in alone, let alone with a kid at home.

My doctors prescribed me Tramadol for pain. It was quite helpful. I did not drive during that period though so that may be an issue if you have to drive. Are you able to organize help your can receive from others to reduce your need to drive if that is at all possible so you can have pain meds that help you live more enjoyable life?

Please stay strong and positive but seek better care if you do not like your doctors or you feel they are shortchanging you! Life is precious especially with a child still needing their mommy so keep up the fight. Keep us posted, I hope things stabilize soon.

Hi Lily, 

   Yes, I agree with you 100% about finding another doctor. I already requested my primary care physician for a referral to another oncologist. It would be amazing if I could find a lung cancer specialist. Regarding biomarker testing, I’m not sure if my doctor ordered a full panel. He again, was a bit dismissive, saying I have squamous cell lung cancer which doesn’t have mutations. When I did some research, I found out that although it’s rare, squamous cell lung cancer can mutate. So this is something I will bring up when I meet up with another oncologist. 
 

   We’re on the same boat as well, having a little one. My daughter is only four, and she’s a mama’s girl. She was crying when she saw I was losing my hair. I said to her that mommy will get some new hair. I got a few wigs and we had fun trying them out, even got a purple one just for fun. I’m so there with you about making good memories. Life is like a collection of memories, some of them on the sad side. We both have tears that we shed in secret. Our kids are so young, and cancer is something beyond their ability to comprehend. I’m looking into getting my will prepared soon. I think it’s a good idea to have it as an added security and peace of mind, as well as an advanced directive. I’m also encouraged by what you said, how you “push yourself out of the ditch and revert back to hope,” that’s pretty much what I’ve been doing as well… this disease isn’t just a physical, it’s a mental battle as well.
 

   As far as the pain, my sister gave me these thc gummies. One 10 mg gummy bear helps with the pain. I’m not sure how they would be long term, it just works for now. I’ll also explore other options such as palliative care and JudyM’s referrals too. 
 

   Hope your Christmas will be filled with more happy memories with your son.  It’s a season that brings hope, let’s enjoy it with our loved ones.

Rosie

[Switching to chemotherapy from immunotherapy]

On 11/23/2022 at 4:58 PM, Judy M2 said:

Here in San Diego we have world-class lung cancer care. I've sent Rosie some contacts by private message.

I agree with Karen about use of the word "terminal". I'm fact, when I was diagnosed, my primary doctor said that lung cancer isn't a death sentence anymore. And my oncologist is such a great cheerleader that I've never felt like he'd just give up on me. 

That’s amazing, Judy. It’s good to hear there are medical specialists who are on your side and don’t dismiss you or treat you like just another body. When I heard my doctor's comment, I had to ask him what he meant. I even had to beg him not to give up on me, that I feel like a boxer fighting this disease… if he could be that coach that helps me through it. This last appointment with him I had on Tuesday before my chemo, he was so abrupt, didn’t give me a chance to talk or ask questions. The appointment must’ve lasted 5 minutes, he just wanted me to go to chemo right away. Anyway, I still find it difficult to talk about. I still can’t get over what he said at the hospital. 
 

Thank you so much as well for your referrals. I haven’t checked them out yet, I’m not sure how to access my pm’s. I’ve been taking thc gummies for pain. Just one 10 mg helps. I stopped taking oxy and morphine, since I need to be driving and take/pick up my daughter from school. 
 

Thank you for the encouraging words, that I don’t have to listen to my doctor’s negativity. I’m just glad it’s Christmas I could drown it out with happy Christmas music. I hope you enjoy this season as well.

Rosie

[Switching to chemotherapy from immunotherapy]

On 11/21/2022 at 4:13 PM, JuneK said:

Oh Rosie, I am so sad to hear that the immunotherapy did not work for you. This is just one more of so many awful things I hate about cancer – it is so damn unpredictable! Sometimes I feel like a lot of our treatments are just trial and error. Since I had combination chemotherapy and immunotherapy, I honestly don’t know which contributed the most to my tumor shrinkage. Have they said anything about doing radiation therapy? It seems like a lot of people do that simultaneously with chemo and have good results. I know there are a lot of factors that go into these treatment decisions that I do not understand, but just throwing that out there.

That must have been scary and awful for you to be in the hospital away from your daughter. But you got through it! And I will send many prayers for you for the strength to get through this chemotherapy and for it to be successful! I’m sorry you are having such a tough time with it. I had a hard time with nausea during my chemo, but fortunately did not have much pain. It sounds like Judy has some helpful recommendations for you in the post above. 

Many prayers to you, Rosie! Hang in there – I hope things get better soon!

June

Hi June, 

    Yeah, you’re right about this disease about how unpredictable it is. At least I don’t have to do infusions of Opdivo which was so painful for my muscles. I’m on chemotherapy with Carboplatin and Abraxane. 
 

   I do hope this is my saving grace. My oncologist said radiation is not an option since there’s a large area that need to be covered. My chemo treatments will go through January. I’m on my second cycle, with two more to go. Thank you so much for your prayers, I’m hoping we both can get to NED and remission too. Have a blessed Christmas season with your family!🎄

Rosie

[Switching to chemotherapy from immunotherapy]

On 11/21/2022 at 3:12 PM, Judy M2 said:

Rosie, there are other pain meds besides oxy and morphine. I can't tolerate either of them, so my palliative care doctor prescribed methadone first, and she switched me to a Fentanyl patch when I went on Tagrisso. I'm happy to give you my palliative care doctor's contact info, I will send it in a private message. She has privileges at the big Palomar Hospital in Escondido. 

My husband is finding that CBD oil helps with his painful hip that needs replacement. I'll get the specifics to you also. 

I'm not sure what oncologist you go to, but if you ever want to make a switch or need a second opinion, there are a couple of names I could give you. 

Hi Judy, 

Thank you so much, I’d really appreciate it if you have referrals to new doctors and palliative care.  I apologize for the late reply, cause of thanksgiving and doing chemo this week. The palliative care physician in might be a bit far for me since I live in Lakeside. My oncologist here in La Mesa, Dr. Kai Zu, although he might be a good doctor, but his bedside manner I find is a bit dismissive. He mentioned to a pulmonologist that I was “incurable”, who later relayed the message to me, this was when I was hospitalized in the beginning of November when I found out the cancer spread to my other lung. It’s concerning, given he made this comment before I even started chemotherapy. 
 

Anyway, I just hope to get a second or third opinion from a medical professional who also cares. I’d appreciate your referrals for oncologists, if you have any that are not to far from central San Diego. I hope you had a good Thanksgiving and a joyful Christmas with your family.

Sincerely,

Rosie

[Switching to chemotherapy from immunotherapy]

5 hours ago, Darius said:

Hi Rossie,

Hang in there. I had carboplatin + paclitaxel in the past and I can relate what you are going through right now. Just like what Justin said, the side effects will become more bearable. I hope eventually you'll feel better not just from the side effects but also from the cancer symptoms which what happened to me.

Unfortunately for me, this chemo regime didn't last long as my cancer suddenly grow afterwards. I hope this drugs will be your last battle against cancer.

Hang in there Rossie

Hi Darius, 

Thank you so much for your positive words. I hope it is really as you say that the side effects do get better. I’m hoping too that this would be the last battle I have to go through. How is your journey going so far? I’m so grateful we have this online community where we could connect with and support each other.  All the best ~ Rosie

 

[Switching to chemotherapy from immunotherapy]

12 hours ago, Justin1970 said:

Hi Rosie 

I'm sorry to hear your struggling with the side effects of treatment I did as well but I took everything they offered me to make it more bearable and it did get better,I ended up with having blood because of anemia and the chemotherapy tablets were worse than the infusion but I took all the pain relief they offered and it did help I stopped them when I no longer needed it especially the morphine I hated that but needed it for my esophagus and swallowing, 

Stay strong and positive and you will get through this my thoughts and prayers are with you hopefully you will start to feel better soon, goodluck with everything Take care Justin x 

Thank you so much Justin for your prayers and encouraging words. I agree with you about pain meds. I also hated taking morphine, the oxy really helps it’s just not something I can take ‘cause it makes me drowsy when I have to drive and run errands as well as take and pick my daughter up from school. I’m take iron supplements for the anemia and am drinking as much water as I can. I’m glad you got through your chemo treatment, and feeling better. I just can’t wait to finish mine cause it is definitely a battle.

Rosie

[Switching to chemotherapy from immunotherapy]

12 hours ago, LilyMir said:

Hi Rosie, life is not fair, isn't it? I also have a little boy who needs his mom and the past year saw me undergo tragic diagnosis, lobectomy, chemo and now targeted therapy. None of it was easy in any way. I recommend  you do not deprive yourself from medications that help with pain and symptoms. I was like that at first but gradually realized that I need to control pain if I am to have any reasonably good time with my kid and family so I took the strong pain meds when needed. Drink lots of fluids (electrolytes are important too) and even ask for more IV hydration before and after chemo if you feel you need it (my dehydration was so bad after my first chemo infusion I ended up in ER). Do not toughen it, rather demand pain and symptom management care, it helps so much, and those doctors are usually very empathetic and give you time, unlike oncologists whom I found for the most part too cold and robotic. Did they manage your anemia?

Hi Lily,

Thank you so much for all the helpful tips. It’s cool to meet someone who’s also got a little one while going through the cancer battle. How are you holding up taking care of your little boy?  I was hospitalized too for five days this first week of November for the side effects of the inmunotherapy.
 

At the hospital, my electrolytes were replaced, they gave me blood infusions to treat the anemia, and that’s where I also had my first infusion. I’m drinking as much water as I can. The pain meds I was prescribed were morphine and oxycodone, however the pharmacist said I couldn’t drive while taking them so I only use it at night. So it’s just dealing with the pain during the day. I did find one of my old tubs of pain relief balms similar to tiger balm and it’s helping a bit. My friend is suggesting cbd oil, there’s topical and ones you could ingest… I guess they’re worth a try.

And you’re so right about how doctors at the hospital are more empathetic vs. oncologists, ‘cause it was the internist at the hospital who prescribed me the after chemo pain and nausea meds I needed. My oncologist mentioned to the pulmonologist that I was “incurable,” and the pulmonologist relayed it to me. It scared me to hear that. I asked my oncologist what that meant, did it mean I was terminal? And he said this before the chemo even started. So I kinda begged him not to give up on me, that I needed a doctor who was on my corner like a coach to my cancer boxer self. I told him that I’m going to fight this with all the strength I have, cause I have a little girl I wanted to see grow up. 
 

So I don’t know where you are in your journey, but I just wanna encourage you to stay strong. Girl, our babies need us to be there for them. We can do this.

Rosie

[Switching to chemotherapy from immunotherapy]

17 hours ago, LouT said:

Rosie,

I'm glad to hear that your oncologist made the change for you.  Sorry to hear about the side-effects as they must be very distressing.  Add on top of it all taking care of a 4-year old and you surely have some challenges.  You sound strong even when you may not feel it.  I've not experienced it, but followed many other survivors here who have gone through chemo and am always in awe of their strength and determination as they meet the challenge.  I believe you are such a person.  I do want to remind you though that any of your symptoms should be reported to your oncologist as there are many ways to reduce some of the side-effects.  Others have also added a palliative care professional to their team to great benefit during difficult therapies.  If you begin to suffer too much please check into that.

Please keep us updated on your progress and ask any questions that may come to mind.

Lou

Thank you Lou for your encouraging words. I have an appointment tomorrow with my oncologist and I’ll let him know about my side effects. You gave me a good idea about palliative care. I’ll be bringing it up on my appointment as well. I just appreciate your continued support.

Rosie

[Switching to chemotherapy from immunotherapy]

Happy thanksgiving week, hope you all get to enjoy precious time with your families. I’d like to share about changes in my treatment. I went through immunotherapy ( Opdivo and yervoy) from July until October this year and I was hospitalized the first week of this month. The immunotherapy caused my cancer to progress and spread to my left lung. It also affected my blood levels and left me severely anemic and dehydrated. 
 

My oncologist decided I needed to switch to chemotherapy ( Carboplatin and paclitaxel). I’ve received my second infusion this week and it’s been rough with the side effects. Most days I’m dealing with fatigue, headache, abdominal, chest and lower back pain. I’m prescribed heavy duty pain meds which I only use sparingly.
 

Through all of this, I’ also have a 4 year old girl I’m doing my best to take care of. I’m hopeful this new treatment works in spite of all the side effects. It’s easy to slip into depression when things get rough. I’m just thankful for this support community, it really helps to meet current patients and survivors who understand what you’re going through and encourage you on your journey. 
 

all the best, 

Rosie

[Good PET Scan Results]

Hi June,

Thank you for your updates, I’m so glad your scans came out with really positive results! It’s good news that even through the painful side effects of Opdivo, your chemo combo treatment works. 
 

I’m going in for my 4th treatment of Opdivo tomorrow morning.  And even though I know I will be feeling some pain as a side effect, I’m not as fearful ‘cause there are people like you for whom the treatment works, as well as the many survivors and their stories.  It encourages me to focus on the big picture, hoping there’s a treatment that’ll work for me too. 
 

Wishing you wellness,

Rosie

[2nd Round of Chemo - a little scare]

Hi June,

I’m glad you were able to finish your treatment even with the back pain returning. I still have one more treatment of Opdivo on the 3rd week of October with scans scheduled for mid-November.  I’m still a bit scared of the treatment knowing how painful it was, and I also had a weird feeling of things closing in and getting a bit dark. I’ll be holding on to hope that I’ll get through this next immunotherapy treatment with the Benadryl and small dose of steroid to treat the side effects. 
 

I’m hoping your scans prove your chemotherapy is effective. I’ve read of possible “pseudo-progression” when it comes to immunotherapy where some patients’ scans show tumors to increase in size even 4 months into their treatments, and after 2 more months ( 6 months into treatment) start to see their tumors shrink. I’m praying you’ll receive positive results especially since you’re already on a strong combination of chemotherapy. 
 

Hope there’s good news for us in the horizon, and even though we’ve both experienced some pain with Opdivo, that if it works out for both of us then all that pain is worth going through. 
 

Wishing you well,

Rosie

[2nd Round of Chemo - a little scare]

Hi June,

I’m messaging you right now from the cancer center. I started with the pretreatment of Benadryl then on to the Opdivo treatment. Sure enough, the back pain crept up again and they just gave me a dose of steroid. I’m waiting now before they restart the treatment. We’re both are sort of on the same boat, hoping this immunotherapy works. I’m not prescribed chemo meds though, my oncologist does recommend switching to chemo if the Opdivo-yervoy combo don’t work. My next scans are gonna be in November.  I’m praying for you and your treatment today, that it all goes well. I hope these meds will help us through. ~ Rosie

 

 

[New to this site]

Hi, I’m Rosie. I just got diagnosed with stage 3 NSCLC. I’m a mom to a 4 year old girl, and work as a substitute teacher here in San Diego, California. I went through diagnostic tests and scans and was surprised at the results since I was a non-smoker and lived mostly a healthy lifestyle. I have a few small tumors on my lower right lung, and two enlarged lymph nodes  on my right collarbone.
 

My oncologist gave me options for treatment, namely chemo, chemo-immuno combo and firstline immunotherapy. I chose to do immunotherapy, a combination of Opdivo & yervoy.   I received my second dose of Opdivo yesterday, and had a bad reaction early into the infusion. I started to feel a sharp pain in my lower back. The nurse paused the infusion, adjusted my position and restarted the drip. A minute passed then I felt the pain start again, so I was given a steroid drip to ease the pain. We continued to finish the Opdivo treatment.  I was told that I would need an IV of benadryl before my next infusion to take care of any side effects.

There are times I get depressed and worried that I wouldn’t be around to care for my daughter or watch her grow. Then there are times I would think about her, and I would feel a sense of resolve that I can endure the treatments, and that there’s hope at the end of all of this. I learned to treasure every moment I have with my girl. Now I’m holding on to hope that I’m on my way to being fully healed.