help my Dad - 1261872

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esperanza
help my Dad - 1261872

Dear All,

I'm here for help as I'm feeling empty in spirit and soul.

My dad has a pleimorphic stage 4 non small cell lung cancer with sarcoma and mets
To liver and some bone areas. 1st Dx in Nov 2011.

Chemo treatments since 2011 with breaks in between are as followed:

Carbo / taxol / avastin / xgeva. 5 cycles ... Great results

Rest

cisplatin / avastin 2 cycles; side effects - he was becoming deaf so cisplatin removed to alimta. Total 4 cycles ... Ok results ( stable)

Rest

Docetaxel / avastin / xgeva - 6 cycles / ok results

Radiation therapy on shoulder

Rest

Radiation therapy on lung

Pet scan on jan 2014 revealed damage to his liver and less to his bone.

We'd be going now on a forth line of chemo; onco suggested a 4 chemo agents cocktail see article below:

Jpn J Clin Oncol. 2011 Mar;41(3):430-3. Epub 2010 Oct 5.
Two consecutive cases of platinum-refractory pulmonary pleomorphic carcinoma that showed dramatic responses to MAID (mesna, doxorubicin, ifosfamide and dacarbazine) chemotherapy.
Lee KW, Kim YJ, Kim JH, Bang SM, Chung JH, Lee JS.

I didn't think my Dad would survive this program (high toxicity but incredible results) so we sought a second opinion.

2nd onco told us about abraxane and gemzar. HAS ANYOne taken this dual therapy? Does it have a lessened toxic profile? i've read the significant results that this dual therapy had on pancreas cancer. Do the oncologist community on this site can comment if it has been administered to lung cancer?

Also learned about Clinoril (sudindac) http://www.news-medical.net/news/20100615/Sulindac-shuts-down-cancer-cel... for "...study reveals that Sulindac shuts down cancer cell growth by binding to nuclear receptor RXRα, a protein that receives a signal and carries it into the nucleus to turn genes on or off." Does the oncology community here use this drug too???

thank you for your interest in reading and replying,

Espera

Dr West
Reply To: help my Dad

I'm sorry about your father's diangosis and recent progression. I'm afraid the Sulindac concept is based on a lab-based study but not clinical evidence in lung cancer patients, and that would not be a high priority to any lung cancer specialists I know.

Gemcitabine and Abraxane (albumin-bound paclitaxel) is a combination of two agents that are active in lung cancer, and likely far more tolerable than the MAID regimen, but Abraxane is essentially a modified version of the Taxol (paclitaxel), so I would be concerned about going on a drug very similar to one that his cancer already progressed on.

As for MAID, I've never seen or heard of a patient with lung cancer receiving this aggressive, challenging regimen usually used for sarcomas. It might possibly be an active combination, but I suspect this is extremely ambitious to give as a fourth line therapy, since the cancer tends to become more resistant over time and people typically lose strength as the cancer progresses and they experience the cumulative side effects of the treatments up to this point.

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

esperanza
Reply To: help my Dad

Dr. West, hi!

Unsure about our time zones so I salute with a good morning or good afternoon!

Thank you for replying to my email and addressing my questions. I read it thoroughly.

Then what? What is available for a 4th line for him excluding those that he has been on? His cancer is pleiomorphic (both non small cell and sarcoma).

Tarceva, iressa, xalkori - a few names of possibilities that are mutation based drugs.
I don't have a lot of faith when I read that 3-5% of patients without these mutations respond; the payoff is tiny for any good outcome.

My Dad wants to fight - he tells us about his desire to continue on. I have to help him.

Your input is so valuable - I've read about all the goodness that you do in and around the cancer community. It's as if meeting you online is equivalent to having met an angel. Can you also prescribe a miracle?

Hugs, Esperanza

JimC
Reply To: help my Dad

Hi Esperanza,

Tarceva can provide a benefit in later line treatment for non-mutants, it's just that the benefit doesn't meet the strict definition of "response". It's more likely to provide a period of stability, which is a good result in fourth-line therapy. You can read about this in the GRACE Faq: http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt/

Beyond that, single agents such as Gemcitabine and Navelbine, while not well-studied in this context, can also provide some benefit.

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: help my Dad

Thanks very much for your kind words, Esperanza.

I really agree with Jim. Tarceva could potentially be helpful, though I'm not sure of what to expect from Tarceva in someone with sarcomatoid/pleiomorphic histology. Beyond that, other chemo agents, such as the gemcitabine and/or Navelbine (vinorelbine) Jim mentioned are very reasonable options, but no chemotherapy has any established benefit after so many prior lines of treatment, so it's really just speculative.

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

esperanza
Reply To: help my Dad

Dear Jim C and Dr. West,

Good afternoon gentlemen- thank you again for taking interest and time to write me.

I will have a discussion with my Dad's oncologist about pursuing a dual antibody therapy of gemcitabine and vinorelbine. If it can just work to shrink the liver tumor, then, i will see it as my Dad having had a "great response."

Have oncologists prescribed gemcitabine + vinorelbine + erltonib in triplet? I've read the side effects of all three drugs alone and there are plenty of overlaps. I was wondering if these overlapping side effects have then an additive (times 3) effect on the body.

hugs,

Esperanza

catdander
Reply To: help my Dad

Oncologists often give these drugs sequentially instead of concurrently. One reason is as you fear the side effects are cumulative so concurrent treatment with several drugs can cause the patient to become unable to continue treatment.
When used one after the other (sequentially) the person doesn't suffer as much from side effects, in turn allows the person to live more comfortably. Also there are only a few options for treatment and will run out quickly when given all at once.

It's really a matter of how the person feels and how well the treatments work. I'd certainly let my husband understand the options so he could make an informed decision. There's so little control at this point.

I hope he does well for a long time what ever he decides,
Janine

dr walko
Reply To: help my Dad

Esperanza, one option you may want to ask your oncologist about is a genetic test done on the tumor tissue that looks beyond the common mutations found in lung cancer. One such test is through Foundation Medicine and is called Foundation One though there are several others. At UNC we often used tests like this when trying to assess additional drug options and it can also help direct patients onto clinical phase I trials.

A limiting factor is having tumor tissue available from a previous biopsy or able to get a new biopsy if not, so it is nit possible for all patients. Most of the time, these tests are paid for by insurance in the US (not sure about other countries).

Best wishes,
Dr. Walko

Christine M. Walko, PharmD, BCOP, FCCP
Personalized Medicine Specialist
Moffitt Cancer Center, Tampa, FL

Dr West
Reply To: help my Dad

I just wanted to agree with Janine that, while someone somewhere has probably given the triplet of gemcitabine + navelbine + Tarceva, I would venture to say that it's not something that I think any lung cancer specialist has ever done or considered. We don't tend to favor adding every drug out there into the same combination just because we can, any more than we would just add spices to a recipe because we find them on the rack. Adding new drugs has a significant chance of adding more harmful effects than beneficial ones, so most thoughtful oncologists tend to be judicious about what drugs to add, rather than just combining everything and seeing how it goes.

-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

esperanza
Reply To: help my Dad

Dear Janine and Drs. Walko and West,

Good Morning! How are you?

I've read your comments and would like to acknowledge their responses; will follow up on the lead Dr. Walko!

As to the triplet question and 'not adding all spices in the cabinet', i got the message. Funny analogy though... Made me laugh and ponder ....

I will try to remember this next time, Dr. West, when I'm in the kitchen looking at my spice rack. I see endless opportunities and tend to mix and match until concoctions come out pallable decent. Thank God my friends (official testers) don't mind my experimental cooking and haven't suffered any short term digestive issues....

Thank you for your interest in replying and your time with me,

Hugs to all, Esperanza

catdander
Reply To: help my Dad

Esperanza, I didn't want to end this conversation without linking you to the other side of Grace just in case you've not seen it. I'm voracious for it and usually link to a blog post from one of our Grace faculty for further reading. So here's a link about second line treatment but it refers to 2nd, 3rd, 4th... Too, don't miss the links following the post.

Best hopes,
Janine

http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-op...

esperanza
Reply To: help my Dad

Dear All,

The end came to an end. My Dad now sits next to our Heavenly Father leaving behind a heavy and sorrowful heart that calls out in pain for the loss of a Father and a husband of 50 years.

I know that most often your replies are for thousand of people whom you've never know or will know. Please know that, I am grateful for the 15 min that all of you took to provide a new light, a comment, and most importantly a sense of hope to my family.

Peace be with all of you.

Esperanza

dr walko
Reply To: help my Dad

My thoughts and prayers are with you and your family. My father died at 51 from lung cancer and his spirit is still a part of my life every day. I pray that you will find the same comfort.

Dr. Walko

Christine M. Walko, PharmD, BCOP, FCCP
Personalized Medicine Specialist
Moffitt Cancer Center, Tampa, FL

Dr West
Reply To: help my Dad

Esperanza,

Please accept my heartfelt condolences. Lung cancer is a terribly humbling disease for all of us, despite everything we as doctors, caregivers, and patients do. Your family's love is a lasting and deserving tribute for him.

-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

catdander
Reply To: help my Dad

Esperanza, I'm so very sorry for your loss.
Hope is something I've thought a lot about in the last few years. I've decided it's one of the things that we as living beings don't live without; there's always something to be hopeful for. Today I imagine your hope is lost in grief. I hope the time ahead will fill less with grief and more with good memories of your dad.

Janine

esperanza
Reply To: help my Dad

Dear Dr. Walko, Dr. West and Janine,

I'm humbled by your gestures of sympathies and warm messages.

A friend of mine told me that dreaming about my Dad can happen anywhere and anytime.
I'm taking along his words and yours with the intent that in time, my brokenness will be healed, my Dad will visit me in my dreams, my Mom will calm her heart and spirit, and we will understand that God's plans are perfect.

Though I see His plan for us, a little selfish side of me fills in thoughts of major adulthood moments that he won't be earthly present. It's deeply sadnening.

Thank you for giving a voice of hope to me when I was in despair and now a channel of hope for the future.

With love,

Esperanza

bobradinsky
Reply To: help my Dad

Dear Esperanza

I just read that your father passed after putting up a brave fight. Please accept my sincerest condolences. I know how difficult it is to lose someone you love so much and I hope you and your family eventually find peace.

Bob