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Has anyone else had stage 4 lung cancer with bone, pelvis and spine mets? Need advice

JMWinNH
Posts: 3
Joined: Jul 2017

My mom was diagnosed 6 weeks ago with lung cancer with mets to pelvis and spine. No real lung symptoms but 1 smaller mass. A large mass in pelvis with multiple other lesions in spine. Main initial symptom was back pain that turned out to be a sacral mass. Had 12 bouts of radiation and then she fractured her pelvis (no fall) where the mass had been. When they did the scan after fracture the lung mass was the same size but the bone mass and lesions had gotten larger. The initial plan had been to use 2 chemo agents but they scrapped that after the fracture and went with optivo. Has anyone else had any luck with this or other treatments? Obviously we are very nervous as what to expect and want as much quality time as possible. Thanks for any help you can give

 

 

Marlac
Posts: 3
Joined: Jul 2017

Keytruda and Opdivo are both immunotherapy drugs, essentially turning the body's ability to fight cancer cells back on. A lot of cancers they are finding are gene mutations. Something on some gene for no apparent reason shuts down a cell's ability to fight cancer. 

There are relatively few or no side effects. No hair loss like chemo, fatigue, gi problems like nausea or diarrhea are the generally the most common problems. My keytruda is every 3 weeks by if, it takes 30 minutes to infuse. They like to use my hand, no caustic reactions.

These drugs are only given stage 4 lung cancer and melanoma. I believe the FDA has recently approved use in some other cancers. You have to have specific protein maarkers at the right levels in order to be approved. My dfoctor says i will be on it the rest of my life. My first follow up ct, after radiation and 3 treatments showed the mass had gone down about 78% and my lymph nodes about 52%. On my second follow up, no cvhanges in the mass, and a golf ball grew in my lymph nodes. I just finished radiation last week and get a recheck in 8 weeks. If worse, I go on chemo. However, I received a study tha t said 25% of people of these drugs are  living up to 5 years with a good quality of life. They do not know who makes the 25% yet. Remember these drugs have only been around for 5ish years.

Best wishes for your mom and you.

JMWinNH
Posts: 3
Joined: Jul 2017

for the reply. It is encouraging to hear others say the new drugs have worked for them. She has started the opdivo but I have not found much info on how it works on the spine and pelvis lesions. What I do read is very positive and am glad that your masses had shrunk so much. Best wishes on the one in the lymph node. My mom did the radiation on the large mass but it has not worked as quickly as we would have hoped for but we were told that it was hopefully just inflammation and that it will work but we just need to give it more time. Thanks again for the reply and good luck on your treatments.

 

tamaven01's picture
tamaven01
Posts: 21
Joined: Feb 2016

I was on Optivo and had a very easy time of it.  There didn't seem to be any significant side effects.  My answer ended up being cabometyx which I started after optivo and it finally did the trick.  I know for some people Optivo is very effective, we're all different. 

With that, on a side note, if she has bone mets and is on pain medicine like MS Contin, she may find her digestive system slows to a halt like mine did.  It seemed no amount of laxatives made things better.  I finally, joyously, discoverd hydrotherapy colonics.  I now have one once a week at my favorite spa and it has literally changed my life.  My doctors barely knew what it was and immediately "warned against it" for that reason.  I've learned to do my own research.  Gently getting a warm water/coffee colonic in certified practioners care has been fantastic.  No more laxatives, as they gave me their own set of side effects.  I also worked with a Medical Marajuana biochemist that made me a 1:1 ratio olive oil MJ based drops I put under my tongue to help me sleep at night and keep my appetite up which has also been fantastc.  Stay hopeful!!  I've been through a variety of treatments and none of them worked UNTIL ONE DID!  Keep up the fight.  

God bless your famiy. Tami

JMWinNH
Posts: 3
Joined: Jul 2017

We will contine on and keep hoping for good news but right now it is mostly waiting and hoping for some improvement with the leg issues. Thanks for the good wishes and i hope all goes well for u and your family also.

vimnjicki
Posts: 3
Joined: Sep 2017

Hello, i was dx last nov 2016 with metastatic lung cancer, stage 4 and in the spine.Started chemo with charboplatin and alimpta in Jan until June 23 when we realized it wasnt working anymore.   I just went on medical leave, not that i really wanted to but its time to focus on myself instead of everyone else at my work. I am in a clinic trial of opdivo and yervoy at UCLA in Santa Monica CA, have had 3 rounds and will have a cat scan on the 22nd. Let your sister find her own reasons to live.  I was like that too at first like oh whats the use, i am not afraid to die, but to my 11 grandkids, while i may be ready, they are not. We give God Glory during the good and hard times. My advise to you, is be the best sister you can be, and if you are younger, please remember she is older.  If you are older, try not to be the mom. A friend goes along way

gcelamjne
Posts: 5
Joined: Sep 2017

It sounds like you are going through the same things as my husband.  The club you really don't want to belong to.  As my husband it sounds like you have a lot of people who love you and who you need to fight for.  The problem is that it is easy for me to say that and while I want my husband to stay positive and fight on, I feel guilty sometimes that I'm expecting too much of him.  How does one know when to push and when to back away?

gcelamjne
Posts: 5
Joined: Sep 2017

My husband was diagnosed early February 2017 with small cell lung cancer with mets to spine and legs.  Radiation helped tremendously with pain.  He had one course of chemo with Carbiplatin and Etopozide with good response but within three months had regrowth.  He is now on chemo with Iranotrochide (not sure of spelling).  He has lost his voice over the last three weeks also which is very frustrating for him.  How does one know when to try clinical trials?  He spends a lot of time in bed these days due to lack of energy.  There are so many things I need to know but difficult to talk to doctor when my husband is there.  Has immunotherapy been of help in small cell disease?

ClaCla
Posts: 137
Joined: Jul 2017

So sorry you and your husband are going through this.  Try calling his doctor to explain you don't want to ask certain questions in front of your husband, and are hoping perhaps he can talk to you privately or on the phone.  If you have his Advance Directives giving you medical power of attorney, I would think privacy laws would not be a problem.  Of just ask your husband to give the doctor the authorization to talk to you about his condition whether or not your husband is present.

Also, your post on this site might draw more response if you start a new thread with perhaps a subject line like:  "Questions about Immunotherapy & Clinical Trials."  Also try the search engine on this site for previous discussions.  And of course try Googling this so you'll become familar with similar websites where you might get the info you need.  Wishing you all the best.  God bless.

gcelamjne
Posts: 5
Joined: Sep 2017

Thank you very much, I will continue to explore.  God bless you!

ClaCla
Posts: 137
Joined: Jul 2017

Hi, is this of any help:  https://www.cancer.org/cancer/non-small-cell-lung-cancer/treating/by-stage.html?

 

gcelamjne
Posts: 5
Joined: Sep 2017

Thank you again.

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