First time here..

[Laurel77]

I was recently diagnosed with stage 3 lung cancer, which has spread to lymph nodes in the neck. After waiting over a month to see an oncologist, chemo'radiation is now coming up soon. I'm not sure which scares me more, the chemo or the cancer. Can anyone please share their chemo experiences? I'm trying to stay 'positive', but that isn't going so well either. Thank you..

[Judy M2]

Hi Laurel, I was diagnosed in October 2019 with Stage 3b NSCLC that had also spread to my lymph nodes. Had 6x of chemo (carboplatin and taxol) and 30x of chest radiation. The chemo wasn't so terrible. I did lose my hair--and my eyelashes several times. I bought some cute headcovers online. I also had constipation, which is a common side effect. I think it took about a year for my hair to grow back, and it's a different texture now, probably due to the targeted therapy I take. 

Radiation was rough for me because I developed a painful case of esophagitis that took 5 months to heal. I don't know what side effects radiation to your neck might cause, so that's a good question for your radiation oncologist. 

My best advice is to get a supportive/palliative care specialist on your team before you start treatment in case you have side effects that can impact your quality of life. I was late in getting my palliative care doctor, and really regret that no one on my care team suggested it. 

When I had my bronchoscopy, my pulmonologist sent a tissue sample out for biomarker testing, and it was determined that I had an EGFR mutation that was causing my cancer. Since March 2020, I've been on a targeted therapy pill and now have No Evidence of Disease (NED). Did you also have biomarker testing done? 

As a, practical matter, chemo infusions are usually boring. I suggest you get a port to save your veins. Bring a blanket, a beverage, snack, earbuds, a book and phone/tablet. You might be able to nap like I did after the IV Benadryl hit. Your medical oncologist should give you a chemo education session prior to the start of treatment. 

Hope all goes well. 

[LouT]

Laurel,

I have not had chemo, my treatment was surgical, but I have some other information to share.  There is an article titled "10 Steps to Surviving Lung Cancer; From a Survivor" and it can be found here.  It was written by one of our members who (19 years ago) was diagnosed at Stage 3 which went to Stage 4 and today has been declared "cured".  So there is great advice and needed hope in reading the blog.  In the meantime others will likely share their experiences and feel free to ask any questions or even just vent if and when needed.

Lou

[Tom Galli]

Laurel,

Welcome here!

Judy's advice is spot on. I had a total of 18 infusions of taxol and carboplatin in my treatment history but my memory of the experience  has little to do with chemotherapy induced problems and everything to do difficulty in accessing a vein. I therefore second Judy's suggestion of advocating a port.

My chemo experience, what do I recall? I had to take an oral course of steroids 18, 12 and 6 hours prior to each infusion and that, in combination with the infused steroid, amped my appetite and drove away sleep. I was consumed by hunger the day after infusion and my eyes were "wide open"! I watched a lot of late night TV the night after infusion and would then crash sleep the day after. We call this "roid rage"!

I had a total of 30 treatments of fractional general radiation (M-F for 6 weeks) during my first treatment. The first 3 weeks of this were a breeze. During week 4, I felt like I was hit by a truck. My energy level was stuck on zero and I slept a lot. Also my throat became very sore and I recall being prescribed a cocktail of "magic mouthwash", an elixir to gargle with and swallow to ease my throat pain. I don't recall it working very well. I still have some lasting side effects from this course of radiation in the form of skin damage on my chest. It is a mild scaring caused by the radiation which induced a sun-burn like pain noticeable in week 3. My radiation oncologist prescribed a cream that was far better in relieving my pain than the magic mouthwash was in relieving throat discomfort.

The purpose of my first line chemo radiation was to shrink my single tumor in the main stem bronchus to allow a successful resection of my right lung. The treatment worked but it did complicate suture healing. But my principal point is my treatment worked and the tumor was "eradicated". I hope your treatment works.

Stay the course.

Tom

[LilyMir]

Hi Laurel,

I understand the anxiety and worry all too well. I was diagnosed stage 3b this Spring. Had major surgery with a lung lobe resection along with a bunch of lymph nodes . Despite negative margins, one node was positive and I had to undergo Chemo to reduce recurrence risk (which is otherwise very high).

Chemo can be very differently experienced by different people, depending on the person, medication and dose. One of my friends had Cisplatin weekly and never had an issue. I had one infusion of Cisplatin and had the worst possible side effects. The key is to advocate for yourself:

• Make sure you have a good medical team you can trust.
• Tell your oncologist right away if/when trouble happens.
• Make sure you have a pain and symptoms specialist on your care team. I did not at first and had to myself push to get them on board. They are great and in my case were much more humane than my oncologist who was so detached and acted more like a robotic chemist.
• Ensure you hydrate so well. I even had extra IV hydration with infusions given the trouble I had with the first cycle (was suggested by my pain and symptom management Dr!).
• Take the medications needed to reduce effects rather than toughen things out. I have a slew of medications next to my bed. Ask away if you need specific info on drugs/experiences. This forum has people with so many experiences.

For me, after a very tough cycle 1, my regimen was changed to another platinum duo (one medication replaced and both reduced in dose) and that reduced my trouble by almost an order of magnitude. Still chemo is no fun, but it can help kill invisible cancer cells so I had to bite the bullet. Like Judy, I have an EGFR mutation and will go on long term targeted therapy next. So many new treatments for lung cancer exist now so being/staying positive is certainly warranted and is not only a cliche.

I have no experience with radiation but many here do and can help you with more info if needed.

When I started chemo in June, I was petrified and thought my misery will never end, but last week I had my last infusion! I am still fatigued and have issues to followup with my doctors but I survived the unpleasantness of these few months and now have a better chance to beat my cancer, hopefully! I sometimes get bouts of sadness/worry/ despair but quickly rebound to HOPE. My 6 year old and my family replenish my strength when my strength and hope dwindle. Find your source of strength and support. We are all here to help too. You can do this!

 

 

[Oceanna]

9 hours ago, Laurel77 said:

I was recently diagnosed with stage 3 lung cancer, which has spread to lymph nodes in the neck. After waiting over a month to see an oncologist, chemo'radiation is now coming up soon. I'm not sure which scares me more, the chemo or the cancer. Can anyone please share their chemo experiences? I'm trying to stay 'positive', but that isn't going so well either. Thank you..

You may not know yet, but you might ask which chemo drugs oncologist plans to use and why those particular ones. I had chemo and radiation at the same time; 6 weeks radio to chest area (so it impacted my throat a bit and made it difficult to eat) and weekly chemo throughout. The 'chemo combo' used for me was carboplatin and taxol (Paclitaxel) and I weathered it fairly well. The side effects will subside once you're done.  I did not lose all my hair. It thinned but I could tie it up and no one ever knew (not that it mattered!).The various chemo drugs are categorized; for example, Taxol is a "Mitotic Inhibitor," aka plant alkaloid, according to the ACS. The ACS has a good overview of the drug, the categories, and how they work, but not necessarily how they'll affect you; everyone is different, depending on age, etc. I'm 68 and gardened throughout the 6 weeks, though it did take its toll with some fatigue; just had to take it slowly but getting out and exercising, i think, saved me. A good balance, of course, depending on your situation, is usually recommended.

[Oceanna]

1 minute ago, Oceanna said:

You may not know yet, but you might ask which chemo drugs oncologist plans to use and why those particular ones. I had chemo and radiation at the same time; 6 weeks radio to chest area (so it impacted my throat a bit and made it difficult to eat) and weekly chemo throughout. The 'chemo combo' used for me was carboplatin and taxol (Paclitaxel) and I weathered it fairly well. The side effects will subside once you're done.  I did not lose all my hair. It thinned but I could tie it up and no one ever knew (not that it mattered!).The various chemo drugs are categorized; for example, Taxol is a "Mitotic Inhibitor," aka plant alkaloid, according to the ACS. The ACS has a good overview of the drug, the categories, and how they work, but not necessarily how they'll affect you; everyone is different, depending on age, etc. I'm 68 and gardened throughout the 6 weeks, though it did take its toll with some fatigue; just had to take it slowly but getting out and exercising, i think, saved me. A good balance, of course, depending on your situation, is usually recommended.

ps. Welcome!

[Laurel77]

Wow, thanks so much to all of you!! I am still trying to navigate my way through this site, and did not see any notifications until today. I was quite sad on Sunday when I posted this, and thought no one responded.  I was thinking, good grief, I can't even find any support on a support site. LOL. How wonderful to see your responses this morning. Thanks again for the support and the info. I appreciate it more than I can express!

I understand the importance of a great medical team that I can trust, as some of you have mentioned. Unfortunately, I am not there as of yet. I do trust my primary doctor, who was the one who referred me to this oncologist and swears she is fantastic. However, my experience there the first time was not good. I felt I was in a meat-processing plant, and I was the meat. Nearly 3 hours in the waiting room, then talked to her for 10 minutes as she laid out my treatment plan, then to the 'chemo room' where she told me 'her girls' would explain the chemo to me, then she left as 5 girls sat and stared at their phones with no one even acknowledging my presence as I sat there alone and terrified. I started to cry a bit, got up to get a tissue, and one looked up and told me to 'take the box' if I wanted then went back to her phone. Good lord.  It just all seemed so cold and detached. It WAS quitting time for them, so I suppose I will give this place another chance. The only thing that made this experience any better was the kind woman who took my blood.

Anyway, the MRI and another visit to this place is coming this Friday. As for the chemo, Cisplatin and Alimta every 3 weeks, 3 times. Then Durvalumab every 4 weeks for a year. I think I can make the 3X treatment, but the year after is what is most scary. They have not yet got the results back from the Bio-marker testing.

I am in a better state of mind than I was. It is what it is, and fighting is now my only choice.

Thank you all again for your kindness and info. I am so glad I now have you to talk to. Bless you all!! xoxox

 

 

[Tom Galli]

Laurel,

If no one provided a detailed explanation of post treatment side effects and adverse indications at your oncology clinic before the first infusion, I'd run, very quickly to another provider. I'd also tell your GP about this very questionable first-infusion practice.

I recall the head nurse spending about an hour explaining potential side effects during my first infusion. Moreover, during my first infusion, the head chemo nurse checked my vitals every 15 minutes and asked if I was experiencing lightheadedness or shortness of breath. Not closely observing all receiving an infusion is a very dangerous condition, bordering on malpractice. Had my nursing staff been "looking at their phones", I'd have found a new medical oncologist. Your GP ought to know about this very questionable medical practice so he or she can avoid referring future patients. Good Lord, indeed! Oncology nurses receive special training to spot and deal with adverse reactions during an infusion. Obviously, looking at a small screen is not close patient observation.

Any reputable oncology practice can safely infuse Cisplatin, Alimta and Durvalumab. Let your GP know the details of poor practice so he or she can stop referring future patients and find a new medical oncology practice, pronto!

Stay the course.

Tom

[LilyMir]

I second Tom's advice Laurel. Chemo nurses 'inattentive and on their phones' is a horrendous malpractice. They should be continuously checking on patients, especially first timers and at the start of each infusion (random allergies can happen too).  I have had one occasion with an unbelievably unpleasant and incompetent chemo nurse (still attentive mind you, but horrendous skills and manners, she poked me twice and still could not find a vein, wanted to kick my husband out of the room because he asked questions about my treatment, she even refused to answer my question about my allergy risk)... I stopped her from being my nurse within a few minutes, called the charge nurse and charged rooms.

Do not accept subpar care in cancer care, it has to be safe and competent, as well as humane. 

[Justin1970]

Hi laurel

Sorry your going through all this it really is a difficult time, I had a chemotherapy mixture of cisplatin and vinorelbine I did have some side effects but did manage to get through it, the radiotherapy wasn't to bad at all until the last week or so, I think I had around 30 sessions of it but it was towards the end when I couldn't swallow properly because it hurt but there was stuff that helped, I'm sure it has also made me shorter of breath but it is all manageable so please stay strong and positive and goodluck with everything all the best

Take care Justin 

[Laurel77]

Thanks, all. More excellent advice, but I now see I was not clear enough about my first time in the chemo room. I did not get an infusion that day, I have not started the chemo as of yet. The oncologist told me her girls would explain the chemo treatment, and sat me in that room. All of the other patients had already left. One girl, after printing out the paperwork, .. came over with papers detailing the chemo, with a newbie by her side. By this time all I wanted to do was get the hell out of there. She gave a quick run down of the chemo treatment. I did say to her as she walked me to the area where blood was taken, that they should at least acknowledge a patient who enters their room. She apologized, seemed sincere I suppose, and left me in the blood chair.

Yes, I am most definitely questioning this place, and will mention my experience to the oncologist when I see her this Friday. My GP still insists this woman is fantastic, and to give her a chance. He also calls me at home to relay his conversations with her about my case, and is very supportive. I've been seeing him for nearly 30 years and I do trust him. So, I will give this place one more chance.

I am also curious, did you all get a second opinion? I am considering going to U of M for a second opinion. My GP told me I can get any second opinion I like, but know that all cancer treatment is regulated by the gov, (comforting, eh?), and I would probably get the same treatment plan anywhere I go. Since U of M is a good 2 hour drive there and back, I am now reconsidering doing this.  I also have an acquaintance who told me she went there for a second opinion, as U of M's Rogel is supposedly the best cancer treatment center in my state, ..and although they were wonderful, kind, caring and very professional, .. they recommended the same treatment plan she was given by her oncologist.

Much love to all of you. xoxo

[LilyMir]

I got a remote second opinion. It was the same treatment plan. Yes, seems treatments are standardized everywhere but maybe there are variations in staging and addressing adverse events? Second opinions are good to have, especially if easy to obtain, I think.

[Judy M2]

I second everyone's suggestion for a second opinion. What concerns me is that they're considering immunotherapy before your biomarker test results are back. Immunotherapy may or may not be the right treatment. 

I've heard patients complain of feeling like they're just a number in some large cancer centers. You need to feel like you're being heard, all your questions are answered and that your team cares about you. It really will make a difference to your frame of mind. 

[Laurel77]

Lilymir.. remote second opinion? I did not realize this was an option.

JudyM2.. yes, I wholeheartedly agree. My second visit with this oncologist is tomorrow. I'm hoping it goes better than the first.

I'm told the Biomarker results will take another two weeks or so. I'm wondering if I should wait to get a second opinion when they come in. I'm also wondering about all of the waiting. I was diagnosed on July 25th, and still have had no treatment. Tests, waiting, more tests, more waiting. I don't know if the chemo they plan on giving me is the right course or not, and the more I read the more confusing it becomes. I hate the feeling of helplessness and being at their mercy. My life is in their hands it seems, and I want it back in my own. However, I can not be who I was before cancer. I guess I am still having trouble letting this new reality sink in.

Thanks, all. xoxo

[Judy M2]

The waiting is excruciating. You want to get going with treatment, but you absolutely have to wait for the biomarker test results to get the right treatment plan. 

You can certainly take this time for a second opinion but ultimately you need to know your biomarker (if any). Your second opinion will--or should--tell you this. 

It's very important to feel like you're a partner on your care team, it gives you a feeling of control where you have none now. You can eventually drive the bus once you get all the facts and a little knowledge. Your diagnosis isn't quite complete yet, so hang in there. 

Cancer does change us, but how is up to you. I learned to have a lot of patience. While I was in treatment, I tried to stay away from conflict and annoyances, and today I still try to avoid negativity and worry. Not easy but it works for me. 

[LilyMir]

Yes Laurel, so many international cancer centres offer remote second opinion. I live in Canada and we have a free universal coverage so a second opinion does not really exist (different doctors but same system and same protocols and one cancer centre in my city). I got a second opinion from Europe as well as informal confirmations from colleagues since I am myself a scientist and have contacts with doctors. If I were in the US, I would seek treatment or at least second opinion from one of the top cancer centres there. I checked and almost all offered remote consultations for a few thousand  dollars. I totally get the anxiety while waiting for answers. My pathology report took weeks, then the biomarker results additional weeks. The results are important though so push for speedier testing so you can start on the right treatment ASAP. Best of luck!

[Justin1970]

Hi laurel

I know it's really difficult times we also have to wait a while in the UK and it is hard,I was diagnosed in August last year and started chemotherapy and radiotherapy at the end of October the waiting was terrible but I did feel a bit better once I got started because atleast you feel like something is being done to help you, I didn't get a second opinion but did question a few things now and again regarding scans and tests, try and stay strong and positive through the anxiety I did take antidepressants and still do, it may take a while to build up in your system but will help with the worry, you really aren't alone through this we are all here to help you get back on track and start living again like you did before all this,my life is definitely different now but you will adjust to the new way of dealing with it, goodluck with everything all the best 

Take care Justin x 

[Laurel77]

My second visit to the oncologist went far better than the first. I also met my radiologist oncologist and liked him instantly. Same with the tech who did my MRI. How wonderful to have a team who approach cancer with knowledge and caring, along with a bit of humor. I feel so much better to finally have a team of doctors that I am comfortable with.

Biomarker results still are not back, but I am hoping for the EGFR gene, which will allow me to take a pill instead of a year long, once a month treatment with Durvalumab.  Regardless, the every 3 weeks / 3 times chemo will begin soon, as will radiation.

Still a bit scary, but I'm not nearly as scared as I was. Forward is the only direction to go.

Thanks again to all of you xoxo