Hi All,
Here is my background: Diagnosed Sept 28 2011, stage 3B Adeno (pancoast turmor, no mutations) - Treatment began October 2011: 6 cycles of Cisplatin/Etoposide with 6 weeks concurrent radiation. July 2012: Rib and sub pectoral met discovered. Cyberknife on pec met (I thought it was the rib but miscommunication) and then more chemo 2 cycles of carbo/alipmta (did nothing) switched to 4 cycles of carbo/avastin. Continued on avastin as maintenance for a long time – into 2014. Cyberknife to the rib. More chemo: Taxol and Avastin, 6 cycles. Tarceva for one month (no mutations so it was a gamble). Taxotere/Cryamza 5 cycles
(some dates may be off but generally accurate)
The count is correct: 12 cycles (not infusions) of platin based chemo!
I am scheduled for my sixth infusion next week of the Taxotere/Cyramza combo and a scan to follow shortly after. I am fairly good at being able to tell if treatment is working and I believe I have hit the end of the road for the taxotere/cryamza effectiveness. I am also feeling the toxicity of all the treatments now. Until recently, I have felt pretty well but have been on a slow and steady decline for the last six months. I know that I have had a really good run, I am still working at this point (thinking about going on leave tho). My oncologist has been wonderful, I have gone for second and third opinions. Checked into clinical trials and every one I tried for I did not qualify for. I am a realist and know that there are not many more treatment options out there but still have to ask the experts.....what is left for me to try?
I will also be asking that question of my oncologist.
I am trying to answer my own question of when to say when (meaning stopping treatment). At what point do I just want to sit back and enjoy the time I have left. I'm not ready to call it yet and know it is completely up to me.
Thank you for the any input.
Ronda
I have had two biopsies done - same results
Reply # - September 24, 2015, 08:26 AM
Can you do Foundation One
Can you do Foundation One testing now?
Reply # - September 24, 2015, 08:27 AM
I already did that, should
I already did that, should have mentioned it but no mutations there either.
Reply # - September 24, 2015, 08:28 AM
Oh, I'm sorry. I hope you
Oh, I'm sorry. I hope you can find something else to work.
Reply # - September 24, 2015, 08:40 AM
Tuliptime,
Tuliptime,
Thank you and please don't apologize for offering suggestions, I am open to anything but do feel confident that I haven't left any stones un turned. But its sites like this that I get my information LOL.
Just your screen name makes me smile as tulips are my favorite flower!
Reply # - September 24, 2015, 03:33 PM
Ronda,
Ronda,
You've not mentioned what your scans say. Although having an idea by how you feel is very important (and I'd say it shows how attuned you are to yourself) the scans tell the tale about what treatment may be beneficial. If you're stable and need a break a watch and see approach may be right for you. At this point your needs (maybe no treatment) are as important as treatment options. If you've been on treatment without break then it may not be known how aggressive or indolent your cancer is. A break with a close eye by you and your scans will give you a break, see how you feel about no treatment and give you an idea of what your cancer is doing on it's own.
As for treatment options immunotherapy, nivolumab has been recently approved for adeno nsclc. Navelbine and gemzar are also single chemo options.
I hope you find a good balance and look forward to hearing more about your thinking process moving forward.
All the best of luck,
Janine
Reply # - September 24, 2015, 04:15 PM
Hi Janine,
Hi Janine,
Based on scans I would call my cancer "semi-aggressive", not very technical but when I'm on effective treatment no growth has been the norm but non effective treatment I get growth....in six weeks I had roughly 1.5 cm of growth on one spot that we watch, minor changes on others. While I was investigating trials I was without treatment for about four months and that same spot grew 3 cm's. My last scan in July showed stable as well as some tiny nodules disappeared, that was the best scan in a long time. However, my pain has increased lately in the abdomal area which is where the pesky lymph node that we watch keeps trying to grow. That plus overall feeling of yuk has me thinking this treatment is no longer working. If I'm wrong and scan show improvement I will probably go a few more rounds but my body is getting tired. If I do have growth I would like to try a more gentle drug if at all possible. I did not know that nivolumab has been approved for adeno, I thought just squamous at this point. That will be my choice for next line.
Thank you so much for the information!
Take care,
Ronda
Reply # - September 26, 2015, 07:56 PM
Janine- youvsaid nivolumab
Janine- youvsaid nivolumab has been approved. By the FDA?
I didnt think so.
But i am reading on inspire that many adeno patients are getting it. So who is paying the tab? Insurers? Medicare? Bms?
Reply # - September 27, 2015, 06:57 AM
Hi phillydaughter,
Hi phillydaughter,
In March the FDA approved Nivolumab (Opdivo) as second-line treatment for squamous lung cancer. You can read about the approval here: http://www.cancer.org/cancer/news/news/fda-approves-opdivo-nivolumab-fo… Not long after that and before any approval by the FDA for adeno it was added to the NCCN guidelines as treatment for adeno as well, and as Dr. Creelan stated back in March:
"Opdivo (nivolumab) is a reasonable option for adenosquamous lung cancer. It sounds like it would probably be approved by most insurance products, although this is new territory." - http://cancergrace.org/topic/poorly-differentialed-adenocarcinoma-is-op…
Since it is approved in lung cancer, it can be prescribed in either squamous or adeno settings, and when the NCCN added it to the guidelines for adeno, that's when those patients began getting insurance approvals.
JimC
Forum moderator
Reply # - September 27, 2015, 07:20 AM
Not all onc use the NCCN
Not all onc use the NCCN guidelines and insurance companies are the ones that decide whether to cover a drug off-label or not. It seems like NCCN jumped the gun by including Opdivo/Nivolumab as tx for adeno and large cell before it's even been FDA approved.
Take care, Judy
Reply # - September 27, 2015, 12:54 PM
I'm sorry for the confusion.
I'm sorry for the confusion. I knew insurance companies were approving nivo for non squamous nsclc and jumped to the conclusion. I'll get some input from one of our oncologist/investigators for clarification. I hope I've not caused undue negative emotions (that's my biggest fear as moderator).
Thanks all,
Janine
Reply # - September 28, 2015, 04:42 AM
Not your confusion, it's been
Not your confusion, it's been caused by NCCN. Many are seeing this there and think they'll get automatic approval and that's not the reality.
Take care, Judy
Reply # - September 28, 2015, 06:35 AM
It seems like there are
It seems like there are clinical trials out there you may be eligible for. It sounds like you've had 4 lines of treatment for metastatic lung cancer, without any known mutation.
Regardless, if no trial is possible, and the cancer is progressing, then nivolumab (Opdivo) is an excellent choice. Nivolumab acts by releasing brakes on your T-cells, and thereby causes durable remissions in a small proportion of patients. In my experience, insurance will authorize the off-label use of nivolumab in this setting. If not, the pharma manufacturer has a patient assistance program that will kick in. Hope this helps. You could also try gemcitabine (Gemzar) if the nivolumab doesn't work.
Reply # - September 28, 2015, 09:02 PM
My sister is in similar
My sister is in similar situation as Ronda. She doesn't seem to qualify for any trials and toxicity from many cycles of chemo is building. Currently, her maintenance Taxotere may be failing. Chemo has seemed to be the only thing that has worked as Tarceva didn't work at all.
I noticed this response from Dr. Creelan and have two questions: 1) Is it still worth trying Opdivo even a tumor is PD-1 negative (test done by an independent lab) and 2) Can Opdivo be started within a week or two of chemo or is it like chemo where the patient has to wait the full three weeks to start it after they finish chemo? If chemo has failed and symptoms are worsening rapidly due to highly aggressive cancer, waiting seems like it allows for a lot of progression.
--Hammer
Reply # - September 29, 2015, 11:12 AM
This post from Dr. West has a
This post from Dr. West has a bit to say about what we know and don't know specifically about nivo. I won't paste it here but it's certainly worth a read. http://cancergrace.org/topic/new-forum-member-from-the-twin-cities-in-m…
I don't know what the wash out time in this case might be (I'll look) but it might be to look at it in a more individual sense. Is a 2 or 3 week wash out too long for a person to wait before beginning a new treatment? and on the other side of the coin does the person need a treatment break? It's part of the balancing act that makes oncology as much art as rule driven.
Since the independent labs may not be using the same tests (a real problem) then it's hard to even say one lab would agree with another's outcome. While it appears (or by now maybe the data is clearly in favor) the more PD 1 positive a person is it doesn't mean that a person won't benefit. Another thing to remember about trials and data is "benefit" is judged by something around a 30% decrease in tumor volume. In other words stable or even some decrease in size isn't given the recognition of "beneficial" in the data while we know that it is perfect for those who only need the cancer to stop growing.
Hoping for the best Ronda, Hammer, and tuliptime,
Janine
Reply # - September 29, 2015, 12:24 PM
1) Is it still worth trying
1) Is it still worth trying Opdivo even a tumor is PD-1 negative (test done by an independent lab)
Yes I think so. It is worth a shot, but expectations for response rate (<15%) should be realistic. I think of it like a "Hail Mary" pass during a football game. Long odds but worth trying.
2) Can Opdivo be started within a week or two of chemo or is it like chemo where the patient has to wait the full three weeks to start it after they finish chemo?
No need to wait. I just start the Opdivo once it gets authorized. It can take time for authorization.
Reply # - September 29, 2015, 03:50 PM
Thank you Dr. Creelan and
Thank you Dr. Creelan and Janine,
Having these answers is very helpful in making decisions.
--Hammer
Reply # - September 30, 2015, 05:51 AM
Had my last infusion of
Had my last infusion of Taxotere/Craymza yesterday. I won't get a scan for another week or so but the results don't matter much as I have decided that this combo is no longer for me. We are going to go for either Optivo (doc wants to check out some facts on how it's working on adeno), or Gemzar. I think I will seek out one of my second opinion doctors in the next week or so to get his opinion as well.
Thank you for all the help!
Reply # - September 30, 2015, 09:46 AM
Ronda,
Ronda,
I hope you have a good scan report. I think it would make a lot of sense to read up on info we have about opdivo for adeno so you can be a part of the decision making. Following is a link to an excellent descussion on the subject http://cancergrace.org/lung/2015/06/24/asco_2015_immunotherapy_nsclc_bi…
Keep us posted and all the best of hopes and luck and comfort and peace, :)
Janine
Reply # - October 21, 2015, 12:27 PM
Hi All,
Hi All,
I just wanted to give an update. My scan came back stable so we know the combo is working. After much discussion with my onc we decided to go with a reduced dosage with the existing chemo and save the other options for later. It's always nice to have effective treatments in your pocket.
Thank you,
Ronda
Reply # - October 22, 2015, 09:39 AM
Hi Ronda,
Hi Ronda,
Congratulations on the stable scan, and thanks for sharing your good news! Stable is always good to hear, and the longer you can stay on a treatment, the better.
JimC
Forum moderator
Reply # - January 2, 2016, 05:24 PM
I just thought I would post
I just thought I would post an update. After nine infusions of Taxotere and Cryamza I'm moving on to Optivo. I have had some progression, minor but enough to convince my onc that we used up the current treatment.
I'm hoping to start sometime next week if the approval process goes as planned.
Thanks for all the support here,
Ronda
Reply # - January 3, 2016, 07:29 AM
Hi Ronda,
Hi Ronda,
Thank you for the update. Although we hate to hear about progression, I'm glad that it is minor, and I hope that your new therapy works well with few and manageable side effects.
JimC
Forum moderator
Reply # - January 3, 2016, 03:17 PM
Hi Ronda,
Hi Ronda,
Thanks for the update. Please let us know how the Opdivo works for you.
My sister is also late stage IV and will be starting Opdivo this week as well.
She did a few rounds of Irinotecan after her Taxotere. Taxotere was rough on her. Irinotecan has helped her lungs, but unfortunately allowed growth of her liver tumors and new brain mets.
We will be asking her doctor what symptoms to watch for with Opdivo. We were told by one doctor that quickly and aggressively (with steroids) dealing with any possible lung complications will be important.
Take care,
Hammer
Reply # - January 3, 2016, 04:43 PM
Hi Rhonda, It's good to hear
Hi Rhonda, It's good to hear from you.
Taxotere has bad rep from a lot of people. I'm so sorry the cancer has progressed and hope the opdivo works a long long time. You're not likely to have the side effects you had with chemo, maybe none at all. I've read that side effects can be well handled as well. T
The best of hopes and luck for the new year!
Janine
Reply # - February 28, 2016, 09:33 PM
Here's another update. I
Here's another update. I have had several infusions with very minimal side effects. Light itchy rash is the worst but that's not so bad. I have been having gut issues that I was dealing with prior to starting this treatment and we are still trying to get to the bottom of that. Trouble eating and keeping food down. I don't think it's connected to the Opdivo but I'm sure that doesn't help either. I have lost too much weight, we are all worried about that. Dropping at least 10 pounds per month. At 5'10" tall, 130 is not a good weight for me. I started this journey at a stocky 190. My skin is all flabby and hanging and I don't like it one bit.
I do have a scan coming up this week and am nervous but that's natural. I'm an Opdivo fan if it works for me.
Thanks everyone for the concern. I will let everyone know what the scan tells us.
Ronda
Reply # - February 29, 2016, 08:12 AM
Hi Ronda,
Hi Ronda,
Thanks for the update. I'm sorry to hear of the troubles you're having, but I hope that your doctor can help you find solutions and that you get good scan results later this week.
We will look forward to your next update, trusting that it will contain good news!
JimC
Forum moderator
Reply # - February 29, 2016, 11:52 AM
Ronda, keeping everything
Ronda, keeping everything crossed for a good scan!
Hoping you're feeling better soon. BTW, my husband is 5-11 and weighs less. He's still not able to get the pounds on and keep them on. He was only a thin 135 to begin with though and very healthy and active.