Since I last wrote a blog post for this site, I’ve enrolled in and left a clinical trial, taken a three week break from treatment, installed a PowerPort, and moved on to standard chemotherapy. My current cocktail is carboplatin/Alimta/Avastin. I’ve left the world of targeted treatment behind.
The reality is that chemotherapy is widely used, and is the first line of treatment for many lung cancer patients who lack genetic markers that would qualify them for immunotherapy or targeted treatment. To quote Dr. Jack West, a leading research oncologist who specializes in lung cancer, “Chemotherapy is not a consolation prize.”
While I was on targeted treatment and opining wisely on how to live with cancer, I knew that my experience was different from most lung cancer patients, indeed from most cancer patients in general. Targeted treatments can have serious side effects, but most of the time side effects are relatively easily managed. I did not appreciate how different, however, until my first infusion. That first round of chemo was rough, and included both severe pain from constipation and four days in the hospital with febrile neutropenia. Instead of side effects being a daily drip, drip, drip of annoyances that demand attention, they were a flood that swept me away for nearly all of the three weeks before my next infusion. I remember lamenting that I had only one decent day before the cycle started again.
Just like with targeted therapy, however, many side effects can be managed. If neutropenia is an issue, there is Neulasta OnPro, a plastic device that delivers medicine that boosts white blood cell production while you relax in a chair at home on the day after your infusion. If one steroid doesn’t control rash, it can be swapped out for another. Now that we have sorted out what I need to handle chemo, it’s going pretty well for me, and I am having several good days during the three week cycle. Fatigue and a foggy brain are a different matter, however, and are side effects that people often complain about. There’s no easy fix other for them than rest and time.
There is even a benefit that I wasn’t expecting. For a couple of weeks of my three week cycle, I am not taking any drugs other than the ones I would be taking if I didn’t have cancer, plus a couple of extra vitamins. I’m a person who is always looking for the silver lining on the cloud, and this is what I could come up as something that I can look forward to each cycle. Don’t get me wrong, if there was another targeted treatment available, I would take it in a heartbeat, but there isn’t right now. So I am sitting in the infusion chair with my knitting and a good book, wearing a handknit sweater, and thankful that I haven’t run out of options.
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You are doing now what my first line of treatment was, before I moved on to try a targeted therapy that wasn't available when I was diagnosed. I wish for you the success that I had with Alimta; once I made it past the first three months with Carboplatin and Avastin in the mix, I staid with only Alimta for a combined total of over 2.5 years. And a lot changed in that amount of time. The way that things are constantly evolving in this arena, it would not be surprising to me if there were two or three good options for you by the time you are ready to move on from chemo. And while you are looking for silver linings, Alimta alone is far easier on your system than the combined cocktail you are now on. (Some patients drop both chemotherapeutic drugs and just stay with Avastin to control the food supply to the cancer cells, but I actually found Alimta to be more tolerable than the Avastin.)
Good luck with this new process. The first few months are definitely the hardest, but it does lighten up once you get over that hump! Just keep focusing on things that you love and enjoy your knitting.
Thanks for the hopeful news, Jeffrey. I know a couple of men with my treatment history who also have had good responses to chemo maintenance with Alimta. Here's hoping it's not a sex linked trait!
I’m one of those women! April 2015 diagnosed, carbo/Alimta for a couple more rounds than most are allowed, and on only Alimta since then for about two and a half years now. Alimta by itself is so much easier than the combo you are doing now. It will get easier, and hopefully you will have an excellent and durable response. “Durable” is my new favorite word after getting favorable scan results today, again. Best wishes to you
anita hope everythings going to help. i,ll be thinking of you everyone here misses you so get better. I,ll be wishing you can get rid of the cancer.just remember were all here for you,we miss you. love susiejo
Hi Anita. Your sweaters are beautiful. You are a truly masterful knitter. What a journey you have had with this nasty disease we all share. You look great. I pray for a good response to your treatment and a long period of remission. We need your knowledgeable advice and advocacy around here.
Jean, thank you! The main sci-fi we are watching is rewatching Babylon 5 - next up in the Netflix disk queue. Did see the movie Arrival, which I highly recommend. I'm reading 2 good books right now, too, "The Sparrow" and "The Long Way To a Small Angry Planet".
Still haven't been able to find Babylon 5, but Will keep looking. It has not been on the Netflix I have. Haven't been to the movies lately between the cataract surgeries and then the flu have kept pretty close to home.
Take care and keep knitting. We need more knitters in this world.
Perhaps your positive outlook is what made me identify with you so much in the first place.
I’m so sorry that it’s come to Chemo, but I’m really interested in learning more about the differences you’ve found. The cocktail that you’re on worked amazingly well for one of the members of my Living With Cancer group. She’s gotten 3+ years out of it so far. She started the trio when it was in its 3d phase clinical trial.
Sending hope that this is the last line of treatment you’ll ever need, that it kicks that cancer into oblivion.
Thanks Denzie. ❤️ Scans next week, and I'm optimistic! I saw my GP today, and he told me that some of the stuff I'm experiencing (rapid pulse, some SOB, a portion of the fatigue) is due to plain ol' anemia. That was reassuring.
Anita, what an awesome blog! You are on what was my first line treatment. I went from there to Avastin as maintenance drug. I didn't do real well on the cocktail or with Avastin. It sounds like they've come aways with treating side effects since i was on it. That's definitely a good thing!!
Praying it keeps everything in check until the next discovery can be made!
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