LisaSH

[LSholt]

Hi, I'm Lisa from N.C.  After requesting that my doctor schedule a routine CT scan for me, he did and after results from that and PET scan and biopsy, I found out I have Stage 3B lung cancer, has spread to a nearby lymph node.  I was not having any symptoms, so I'm really glad I requested the routine scan.

Have been through so many emotions since then, which I'm sure a lot of you can relate to... fear, anxiety, sadness, and then found my desire to FIGHT.  From the time I had the first scan until I actually started any treatment (chemoradiotherapy) was 3 months, a time of worrying, wondering if it was getting worse, and learning I really have to push and advocate for myself, or it would have taken even longer.  I'm now in my 5th week out of 7 for the chemo and radiation, then expecting to start some type of immunotherapy.

I have a couple of questions that I was hoping someone could answer....

   - for anyone who has received chemo (I get Taxol, then carboplatin), did you have any issues tolerating the chemo (besides the usual expected side effects)?  For the last couple of weeks, I have had a severe coughing episode while receiving the Taxol, to the extent they had to stop giving it to me, give me oxygen, etc.

  - I also cough a Lot at home, especially during the night, am getting very little sleep.  I've used both OTC cough medicine and prescription meds, started using a humidifier, eating honey mixed with lemon, etc.  None seem to help.  Any other suggestions that you have found that worked for you?

-can I expect a lot of side effects from the immunotherapy as well (will probably be a once-a-month infusion).

Sorry for such a long post, but so happy I found this group to share with!

[RJN]

Welcome Lisa - so sorry you are having to come here, but also rest assured that there will be plenty of support throughout you journey.

I haven’t had chemo, so I cannot offer any insights. But I have been on immunotherapy for a couple of years now (pembrolizimab), and it has been very effective.  My main cancer and lymph nodes are now clear of active cancer, and the metastases I had have been removed surgically, so now just holding my breath to get my oncologists’ view on what is next.

Re side effects: immunotherapy is a tricky beast. Many have absolutely no side effects, some have quite severe ones. Some get them straightaway, some after several years. Oncologists will generally admit to being a bit in the dark about it - mine take plenty of notes when I describe any issues. I am a member of numerous immunotherapy FB groups which have been helpful in getting my head around it. In general, my impression is that the vast majority have no or very limited side effects. Fatigue, sore joints, itching and colitis seem to be common ones.

Finally, I had a quite nasty cough in the early days. Codeine (a very mild opioid) was the only thing that seemed to help me. I only took it for about a month, as the immunotherapy stopped my cough.

All the best, Rikke

[LouT]

Hi Lisa,

Welcome to the club nobody wants to be a member of.  My treatment for LC was surgical so I cannot answer your specific questions, but I'm sure others will be along shortly to help with those for you.  In the meantime I'd like to share a few things with you that are pretty universal.

1. Please take some time to read "10 Steps to Surviving Lung Cancer; from a Survivor".  It was written by someone who was diagnosed at Stage 3 then progressed to Stage 4.  This person had many recurrences and treatment and after 18 years was declared "Cured".  You will likely hear from him as well.  In the meantime these steps are very helpful as you begin this difficult journey.
2. There is a section called "Lung Cancer 101".  It has a lot of information on every step of the journey including diagnosis, treatment, follow up, and much more.
3. Finally, stay away from Dr. Google.  The survival stats they have are based on 5-year averages and don't show the full impact of newer treatments nor does it take into account the individual situation that goes along with every person afflicted.

You're not alone anymore so please hang in there and know that we will be here.  BTW, I've only been to Asheville twice, but I really enjoyed it.

Lou

[LSholt]

Thanks so much for your replies.  Before I started treatment and was so frustrated/scared at the length of time it was taking to actually get started with treatment, I contacted the lung cancer center at Atrium Baptist Hospital in Winston Salem, immediately got an appointment there and got established with a great doctor there.  Since he was recommending starting out with chemo and radiation, and the radiation would be given every day, he arranged with my local cancer centers to immediately begin treatment here so that I would not have to drive from Asheville to Winston Salem every day.  Once I am through with these, he will become my primary doctor again and I will get all future treatments, including the immunotherapy, through him.  I feel very confident and comfortable with going there and will have access to a broader range of treatment options and also clinical trials if needed.  I would like to acknowledge that I have been treated very well at the local centers I am currently going to, I just felt I needed to strongly advocate for myself on not just the length of time everything was taking here but also looking ahead to where I might have the most options for future treatments.

I meet with my chemo doctor today and will discuss the possibility of switching to a different chemo, even though I only have 2 more treatments scheduled.  Of all the many side effects I have experienced from the chemo and radiation, most are tolerable or handled well with other medications.  But this persistent cough has not been manageable and I'm not sure I can handle 2 or 3 more weeks of it, the episodes are just so bad.  RJN, Thanks for the suggestion of the syrup with codeine, I will also ask him about that.

LouT, thank you for listing more resources, I will definitely check those out, and I am glad you said to stay away from looking at statistics on Google.  Of course, that wàs one of the first things I did when I received my diagnosis, wanted to know exactly what I was facing, but got confusing and contradictory info and I also came to realize everyone is different and may respond differently to treatment.  So I will remain as informed as I can and try to make treatment choices based on my doctor's opinion as well as what I feel is right for me.

I am so grateful for this forum and having a place to share.

 

 

 

[LouT]

Lisa,

Thanks for the additional information.  You are doing the right thing in advocating for yourself.  We need to be active in our treatment plans.  You mention the difficulty in waiting during the diagnostic process.  If you read other posts you'll see that you have lots of company on that point (including me).  The anxiety is perfectly normal, but seems to reduce once we get a treatment plan.

One thing I've heard people find useful when taking chemo/radiation treatments is to have a "palliative" specialist added to their medical team.  This person can work with the patient and doctor to help reduce and address side-effects sometimes before they occur.  They have a lot of knowledge of additions to treatment that ease or eliminate them.  Please speak to your lead doctor about this and get their opinion.  For my part I've heard enough to know that if I do go through chemo I'd look for that support.

And yes, Dr. Google is contradictory and depressing.  I'd rather hear from my Oncologist than any webpage.

Lou

[Tom Galli]

Lisa,

Sorry, I missed your post. We share a diagnosis and treatment plan. My first line (first treatment) was chemoradiation with Taxol and Carboplatin infused every week and daily radiation. This treatment lasted 6 weeks (Monday-Friday) and it worked. That was nearly 20 years ago!

There are newer conventional drugs these days, but the old reliable Taxol and Carboplatin are best at dealing with solid tumors and that is why they are used. They do come with side effects, however. Mine are a neuropathy that causes a painful burning sensation in the toes (called Taxol toes) and a loss of feeling in my fingertips and ringing in my ears. But my first treatment plan was used to allow surgical resection of my tumor and it worked! I've been hanging around here for a long time and these are some of my lessons learned on infused chemotherapy: "I've Got Veins, Maybe"; "Insomnia and Lung Cancer"; and "Reflections on Infusion". Your most important takeaway is chemoradiation with these drugs can work. Most importantly, following up with Immunotherapy often is very, very effective. I know many on this Forum who've had first line chemoradiation followed up with Immunotherapy and after 2 years on Immunotherapy, they have no evidence of disease (NED) and no longer require any treatment!

So there is a vast amount of hope today for lung cancer treatment. 

Stay the course.

Tom

[RJN]

Oh, just an addition. I didn’t get syrup with codeine - just codeine tablets combined with paracetamol. When I tried syrup previously it didn’t seem to be as effective - but perhaps you can get a script for both. What it does is that it dampens your cough reflex, so you can get through the night (I had a horrible feeling of water slushing around my left lung that made me feel like I was drowning). 

[LSholt]

Tom Galli, thanks for sharing your experience, you've given me a great deal more hope.  I met with my chemo doctor today and he is taking the Taxol out my regimen because of severe reaction I've had the last 2 times, will continue with the carboplatin, only have 2 sessions left and hoping it won't affect my outcome. Thanks for listing the immunotherapy resources as well, I will check those out for sure.

RJN, he did prescribe the syrup with codeine, hopefully that will work and I can get some much needed sleep, but it's good to know there are tablets too 

I appreciate you all taking the time to answer my questions, it helps so much to be able to share with others who are going through the same thing.

[RJN]

Fingers crossed. Let us know how you get on. When you get to the immunotherapy, let me know if you need some pointers to various groups. They can be helpful to navigate the weird world of immuno.

[Karen_L]

Hi @LSholt, I'm so sorry you have to be here, but this is a great group.

Do you know what protocol your team is following? Just curious-- I started as a IIIA and the tumor board started me with the Pacific Study protocols: chemorads-- carboplatin/paclitaxel -- followed by immunotherapy (durvalumab). 

Regarding the cough: has anyone done a scan for pneumonitis? That's a kind of inflammation of the lung. Coughing can be a signal of that inflammation. You'd want to know that before starting immunotherapy as pneumonitis can become an issue with some of them. Do you know what the immuno agent will be?

This is hard, I know, but you are doing great. Hang in,

Karen

[tgif i guess]

welcome 

i did not have taxol but from my reading its a rough go for most- i also had no radiation

i DID have carboplatin (mixed with alimta) - carboplatin has been a nothingburger for me on side effects - taste changed so all the foods i loved tasted like metal but it took awhile for it to develop and return after discontinuing (took carboplatin every 3 weeks for like 8 months) - took a white blood cell booster while on carboplatin but it kept my bloodwork (cbc, cmp, cea) in the normal ranges

i still take keytruda every 3 weeks and have no side effects that i can notice - as far as i know, that will be the rest of my life or until it attacks my body

i still take alimta every 3 weeks but that is not for your type of cancer

last 2 pet scans were completely clear - having another friday - i am stage 4 lung (similar to mesothelioma) - it had a small hit on a lower spine but the real fireworks show were the lymph nodes in my chest - big time hits 

i don't know if it was the carbo or keyturda that put me in remission but i tolerated both of them very well - i take steroids the day before, day of and day after the carbo/alimta infusion that keep me awake and eating everything in the house - and constipation is no party - but zero nausea and i still have hair 

when you get to carbo and immunotherapy i bet you will feel much better - and - when recalling how good that pizza was before carbo, you can still eat the pizza (that now tastes like they put grated steel on it instead of cheese) because it won't make you nauseous - bonus tip - peanut butter still tastes like peanut butter - even better - CHOCOLATE STILL TASTES LIKE CHOCOLATE (and your sisters will bury you in reeses peanut butter cups and peanut butter m&ms

(to be fair, i am on a ton of old blue haired ladies prayer lists - best ones to be on because they are too old to sin and have a lot of pull upstairs)