questions

Posted By
Anonymous
6/7/2018 9:13pm
Activity
Replies: 4

i was diagnosed with stage 2 b in March of 2014.  I had wide excision surgery with a sentinel lymph biopsy.  My melanoma had not spread to the lymph nodes. I continued with full body checks every 3 months until two tumors close to the primary were found in my leg in May 2017. I was diagnosed with Stage 4 melanoma.  It had spread to the lungs.  I have been on Keytruda since Aug. 2017 and doing well. The tumors in the leg have been shrinking and only 1 tumor remains in the lung.  Luckily it has not gotten bigger.  My understanding is Keytruda only works in 40% of patients.  So my questions are:

 

1.   If it stops working when has it stopped working?

2.   If you can with stand the side effects and are seeing progress how long do you stay on keytruda?

3.   If you go off keytruda and the cancer returns do you go back on keytruda?

4.  What is the life expectancy for stage 4 patients.

My oncologist doesen't seem to want to answer these questions.  I just feel like I am going thru this blindly.  Any input from those that have been thru this would be greatly appreciated.  I think the not knowing cause more anxiety than knowing what to expect.

 

Thanks 

 

 

 

 

Bubbles - (6/8/2018 - 8:24am)

Hi Anon,

Unfortunately, melanoma doesn't play by any set rules.  Simultaneously, despite the great strides that have been made in melanoma since 2011...there is much we do not know.  As to your questions:

1.  Treatment for melanoma is recognized as "not working" when tumors never shrink or start growing consistently.  There are cases where one pesky lesion remains despite a good response in other tumors.  Sometimes they are simply surgically excised.  At times when that is done...nothing particularly viable is found.  At other times it is a melanoma met...but once it is out it is out.

2.  How long to take immunotherapy is unclear. However, most melanoma specialists are leaning toward 2 years and/or one year past NED.

3.  Many folks with immunotherapy who do respond to anti-PD-1 initially...but then recur, have been rechallenged and some respond very well...again.  Here is a post that addresses that in part:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-outcomes-for-melanoma-peeps.html  (There are links within that post that you may find even more helpful.)

4.  Depends. On.....luck, amount of tumor at the start, location of tumors, response to therapy.  

Here is a primer about general treatment options in melanoma: 

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

My best tips.  Make sure you are seeing a melanoma specialist.  If my doc doesn't answer my questions, then he/she would no longer be my doc.  Consider giving yourself a name.  Doesn't have to be your real name.  Try Little Bo Peep or Humpty Dumpty.  Either way, folks are more likely to answer you and be able to "know" who you are as related to prior posts and can then given you better information.

And finally - LIVE!!!!  Don't let melanoma take your life before it actually has.  

Been in melanoma world since Stage IIIB in 2003, Stage IV with brain and lung mets in 2010, Nivo only trial from Dec 2010 to June 2013.  No treatment since.  Still NED.  There is hope.  There are other treatments after anti-PD-1 (Keytruda or Opdivo) should you need them.

LIVE BIG!!!  I wish you my best.  Celeste

 

happyfeet123 - (6/9/2018 - 2:27pm)

I wanted to thank everyone for responding back to my questions and the amount of knowledge I gain from this forum.  My doctor stated the five year survival rate for keytruda is 43%.  If you have  a complete or partial response does your survival rate go up?  What if you melanoma remains stable?  Also, my last two pet scans show I have some metabolic energy that is increasing on my right leg.  (not sure if this is the correct wording)  My doctor doesn't think this is melanoma.  She wanted to continue with the keytruda and perform a fine needle biospy if the other tumors shrank and this grew bigger.  I was in agreeance in the beginning because the treatment was going to remain the same.  After further thought, I thought I should go thru with the fine needle biospy.  I think we should know if it melanoma or not.  Any thoughts.  I am going to MD Anderson in Houston at the end of the month for a second opinion.  

 

Thanks

Happy Feet 123

ed williams - (6/8/2018 - 9:38am)

Just to add to what Celeste gave you are two post on the pembro trial keynote-006 ( Pembro vs Ipi) that stopped patients at 2 years. The data shows 86% of those in response continued to be in response 20 months later after stopping. So the data on the little mice (patients) in this trial is about 4 years out. The article also gets into retreatment of those who progress after stopping where those that stopped and then progressed were retreated. You can read the links for yourself to get the idea.http://www.cancernetwork.com/asco/pembrolizumab-effective-unresectable-m...   https://meetinglibrary.asco.org/record/159075/abstract