No more stable - 1262948

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Paulina
No more stable - 1262948

After almost five stable years there is now clear progress in the primary tumor and in all nodules and GGOs in all lobes of my right lung. Also new nodules and GGOs have appeared. A ct guided needle biopsy will be taken early April.

I had 4 times Cisplatin+Alimta plus 39 times Alimta during Feb 2009 - March 2012. Break from treatment has been two years. I did not have any major side effects from these treatments.

My questions are the following:
Has it ever been successful to use Cisplatin or Carboplatin again after a long break?
How many times (maximum) can they be given altogether if the patient is enduring this chemo combination?
Is there a maximum number for Alimta treatments?

I will naturally first wait for the result of the needle biopsy in case I have EGFR or ALK mutation, but if they are negative, I would prefer Cisplatin+Alimta or Alimta alone, if possible.

Paulina (BAC stage IV since 2009)

JimC
Reply To: No more stable

Hi Paulina,

Welcome to GRACE. I'm sorry to hear of your recent progression, but I think the fact that your cancer was stable for five years is a very good sign that it will respond to further treatment. Traditionally, oncologists did not return to a chemo drug that was used previously, but that thinking is changing. Since you stopped Alimta not because of progression but in order to have a treatment break, there is every reason to believe that it was keeping your cancer under control and can do so again at this point.

As far as whether to use a platinum agent with Alimta, this is not the general practice although in an unusual situation such as yours, it could be considered. The platinum drugs compromise bone marrow function and for that reason are usually not repeated, but there has been such a long interval since you had any chemo, the risk may not be as great.

As Dr. Pennell wrote:

"Although traditionally oncologists did not “go back” to drugs that have already been used, I would say that attitude is becoming less common with modern agents. I feel very comfortable re-challenging someone with a chemotherapy agent if that drug was stopped for a reason other than progression. For example, if someone has significant fatigue on Alimta after many cycles and wants a break, I would have no problem restarting it again if the cancer progressed many months later. If I was convinced that the cancer had become resistant to that drug, however, it would be rare to try using it again. We will sometimes reuse a chemotherapy drug if it has been a long time since it was used, usually more than a year." - http://cancergrace.org/topic/progression-on-gemzar#post-1260439

[continued in the next post]

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

JimC
Reply To: No more stable

[continued from the previous post]

In that same thread, Dr. West added:

"In the absence of convincing, clinically significant evidence of progression on the agent in question, I am reluctant to discard a treatment too early, at least one of the handful of agents that can be administered for a prolonged period without too many cumulative side effects, and Alimta (pemetrexed) is one of those.

I also agree that a platinum doublet is a tempting idea in someone who hasn’t had a platinum before, though the cumulative bone marrow suppression from having been on chemo for years may make it challenging or even infeasible to deliver a doublet years into systemic therapy."

The fact that you had a platinum drug previously, and quite a bit of chemo over the years, makes adding it to the Alimta less tempting.

Good luck with your treatment.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: No more stable

As Jim noted, we tend to favor treatment out to 4-6 cycles of a platinum-based doublet as a clear point of diminishing returns. However, in patients who didn't actually progress on the prior regimen, it is arguable to consider doing back to the doublet, while bearing in mind that there is a cumulative risk of hypersensitivity reaction with ongoing platinum-based chemo, especially carboplatin, while cisplatin poses a particular risk for cumulative kidney damage and/or neuropathy.

The general principle I follow is that if we can't feasibly be treating for cure, I favor the least toxic approach to control the cancer over the next significant chunk of time (say, several months). If the cancer is indolent enough, the least toxic approach may just be ongoing surveillance with a plan to intervene when it looks more like there's an actual risk of cancer-related symptoms in the near future, as opposed to giving potentially side-effect inducing chemo that may well be worse than the underlying disease. If the cancer progression is significant enough to justify treatment, I favor the least toxic approach to do the job: if a single agent approach can feasibly do the job of controlling/shrinking the cancer (including consideration of a previously administered agent if there wasn't prior progression through that treatment), then I favor a single agent over a doublet. If it's more likely a doublet will be required, then a doublet is reasonable, though we'd prefer to use the least challenging doublet to do the job.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Paulina
Reply To: No more stable

Thank you for the professional responses and encouraging words. This information helps me in weighing pros and cons of these chemo options.
I participated in the trial for maintenance Alimta for three years. My treatments stopped when the trial ended. I hope to return to Alimta, which felt like “targeted” therapy for my disease.
Thanking you once again for your invaluable support for lung cancer patients and for your informative, reliable website,
Paulina

Stage IV adenocarcinoma (BAC) EGFR Exon20 diagnosed 2009, chemotherapy incl. 4xCisplatin-Alimta, 59xMaintenance Alimta, 4xCarbo-Taxol

Paulina
Reply To: No more stable

The result of my needle biopsy was papillary adenocarcinoma, although my diagnosis five years ago was BAC. Proliferation MIB index was less than 10pct, which I understand is not very aggressive.

Treatment will be started with four carboplatin+Taxol doublet. My doctor said it is up to me when to start the treatment, but I think the sooner the better.

I wonder if there is any information about proiferation and the scale of MIB-1 index available at Grace?

Paulina

Stage IV adenocarcinoma (BAC) EGFR Exon20 diagnosed 2009, chemotherapy incl. 4xCisplatin-Alimta, 59xMaintenance Alimta, 4xCarbo-Taxol

Dr West
Reply To: No more stable

Sorry, that's a little too specific. I don't know of any clinical research with that level of granularity and suspect there isn't any.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Paulina
Reply To: No more stable

Thank you for the reply and for the good wishes. I was just wondering the significance of the proliferation index.
Actually there is another question bothering my mind. Five years ago the histological subtype of my lung cancer was BAC, whereas the progression has now been diagnosed as papillary adenocarcinoma. Is it typical that what was considered BAC five years ago can change into another type of adenocarcinoma?

I was hoping for a less toxic chemotherapy, but I'll try to cope with the doublet carbo-taxol.

Paulina

Stage IV adenocarcinoma (BAC) EGFR Exon20 diagnosed 2009, chemotherapy incl. 4xCisplatin-Alimta, 59xMaintenance Alimta, 4xCarbo-Taxol

catdander
Reply To: No more stable

Papillary adeno seems to be considered a rare subtype of BAC. It's very possible for a cancer to change histologic chem while being quiet for 5 years, basically trying to find it's way back. It's also possible that it was papillary in the first place. You'd need to speak to your oncologist about the significance for you but since it's so rare there isn't a standard of care for it beyond standard of care for nsclc. I did some poking around and found this from PubMed published in 1997 (a long time in nsclc these days), "There continues to be confusion as to whether papillary adenocarcinoma (PA) of the lung is a specific histologic entity or simply a variant of bronchioloalveolar carcinoma (BAC). http://www.ncbi.nlm.nih.gov/pubmed/8990140 and from the same site but 2005, " progression markers and tumor suppressor products found that PA (papillary adeno) seemed a more advanced adenocarcinoma than BAC, but no differences were observed among PA subtypes." http://www.ncbi.nlm.nih.gov/pubmed/16185291

I hope you understand if your chemo regimen of taxol/carb is too tough an easier one can be used. Your doc prob wants to knock it down hard with the first treatment and that combo has shown to be the one.

I hope you are pleasantly surprised at how easy the chemo is on you. Read up on staying ahead of chemo side effects it can make a huge difference.
Keep us posted,
Janine

Paulina
Reply To: No more stable

Thank you, Janine, for your efforts in finding all the information. My pulmonologist said that mixed subtypes are possible and that my scans look like BAC. I hope this subtype will respond to chemo as it did five years ago. I will do my best to avoid the side effects by using all the means that are available.

Thank you so much for the encouraging words. I got a lot of positive energy from them.
I needed this cheering up as I'm getting prepared for the first session.

Paulina

Stage IV adenocarcinoma (BAC) EGFR Exon20 diagnosed 2009, chemotherapy incl. 4xCisplatin-Alimta, 59xMaintenance Alimta, 4xCarbo-Taxol

Dr West
Reply To: No more stable

I agree with Janine. It's not rare for me to see BAC characterized as papillary adenocarcinoma, and I would not presume that they are a different process. That's certainly possible, as a lung cancer can have different areas that appear as one subtype vs. another, but I think there's a very significant chance it's the same process being called two different things.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

Paulina
After two years break from

After two years break from any kind of treatment my lung cancer has progressed to the extent that I finally can do chemo again. My doctor wants to see whether Alimta is still working. So far I have had two rounds of Alimta. One more session has been planned before a CT scan. It will be my 50th treatment with Alimta. In March 2012 the trial for maintenance Alimta was terminated and my long-term use of Alimta was discontinued.
I am still doing rather well, but I have been coughing up mucus since last fall. I’m very tired of constant coughing.
Is mucus typical also for papillary adenocarcinoma? Can it turn into bronchorrhea also in my disease? I suppose there is no remedy for coughing up mucus.

I would also like to know, if there is any hope left in case I have developed a resistance to Alimta.
My doctor does not recommend Taxotere, because I have had Taxol in 2014. I understand that Navelbine is not very effective. Tarceva is not an option, because of Exon 20. My ALK test came out negative. Immunothererapy will probably not be available for adenocarcinoma in the near future in our country.

I am extremely thankful for surviving seven and half years with only chemotherapy for my stage IV lung cancer, but I am not yet ready to give up my fight.

Paulina

Stage IV adenocarcinoma (BAC) EGFR Exon20 diagnosed 2009, chemotherapy incl. 4xCisplatin-Alimta, 59xMaintenance Alimta, 4xCarbo-Taxol

JimC
Hi Paulina,

Hi Paulina,

I am sorry to hear of the progression of your cancer. It is not unusual for a BAC cancer (which may be the same process as what is being called papillary adenocarcinoma, as Dr. West said earlier in this thread) to cause a mucus-producing cough. Usually the best way to reduce that cough is by successfully treating the underlying cancer. Over the counter medicines such as Mucinex may help reduce the symptoms.

Since there has been a long interval since your earlier treatment with Alimta, I think it is perfectly reasonable to return to it now. Taxotere may also be an option, since there have been studies which have indicated that it can be effective even after Taxol. There may be other agents available in clinical trials in your area, and lung cancer research has been producing new therapies at an increasingly rapid pace. Certainly not time to give up!

Good luck with Alimta.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Paulina
JimC,

JimC,
Thank you for all the information and for the hopeful viewpoint. I was getting ahead of myself when worrying about future treatments while still having Alimta. I have been coughing less during the last two days.

I am happy to know that Taxotere is not totally ruled out after having Taxol.

Thank you so much also for your words of encouragement.

Paulina

Stage IV adenocarcinoma (BAC) EGFR Exon20 diagnosed 2009, chemotherapy incl. 4xCisplatin-Alimta, 59xMaintenance Alimta, 4xCarbo-Taxol

Paulina
I would like to give an

I would like to give an update on my treatments. After three sessions of Alimta I got good news. My CT chest scan showed that chemo is still doing it's job. My lungs are looking clearer. Large areas of GGOs have vanished, I'm not coughing any more and I'm feeling much better.

Since my diagnosis in 2009 I have had already 50 rounds of Alimta, 4 in combination with Cisplatin 2009, 43 in the clinical trial 2009-2012 and 3 in July-August 2016. So it is possible that Alimta can be effective this long.

Therefore I will have three more treatments with Alimta every four weeks starting today.

I am extremely grateful for all the information and support you have provided me with.

Paulina

Stage IV adenocarcinoma (BAC) EGFR Exon20 diagnosed 2009, chemotherapy incl. 4xCisplatin-Alimta, 59xMaintenance Alimta, 4xCarbo-Taxol

catdander
What wonderful news Paulina!

What wonderful news Paulina! I hope you do very well moving forward in making your cancer a chronic issue instead of a terminal one. Don't forget chemo breaks are always on the table while you do so well.

Congrats,
Janine

Paulina
Thank you Janine for your

Thank you Janine for your encouragement. Often longer survival rates are achieved with targeted therapy, but it is also possible to survive 7,5 years with only chemo. Breaks are necessary indeed. I have had twice a two-year break. A CT scan will be done after my sixth Alimta this fall. Naturally I am aware of my terminal illness, but I prefer thinking of it as a chronic issue and love every day of my life.
Thank you so much for caring.
Paulina

Stage IV adenocarcinoma (BAC) EGFR Exon20 diagnosed 2009, chemotherapy incl. 4xCisplatin-Alimta, 59xMaintenance Alimta, 4xCarbo-Taxol

catdander
Good outlook Paulina and very

Good outlook Paulina and very reachable. I honored to know you and the tough decisions you've made.