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How to best help my mom with Melanoma in lung

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How to best help my mom with Melanoma in lung

Posted By
Habs27
1/11/2020 9:07am
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Replies: 13

Hey there. I am so grateful to find this forum.
My mother just had a 3cm tumour found in her left upper lobe in December. They proposed a wedge resection, but in waiting a month for surgery it doubled in size and her pain through the roof. They biopsied and found it was Melanoma. She first had Melanoma in the skin 6-7 years ago. They thought they had a good margin so no further treatment at that time.

Now surgery is cancelled (too risky, close to ribs/spine) and we are trying to get her pain controlled (currently on 6mg of hydromorphone every three hours) and are awaiting referral to the cancer agency. She is devastated as she has heard melanoma is so deadly, but the doctors said fast growing tumours are easier to treat.

- Has anyone had good experience with cbd for pain control at least to help taper the opiates? It hasn’t been suggested by the nurse practitioner, but I’ve heard good things. I would consult the team first of course.

- she is very stressed about the news as she thought surgery would take care of this. While waiting for the cancer center and an oncologist, how I can I best help her cope (counsellor?). The waiting is the hardest part for her.

-Any idea what the current treatment for an inoperable lung MET? It sounds like some kind of systemic treatment (immunotherapy or chemo).

-the NP has said this will eventually kill her. Others here have said Melanoma is curable?

Any information or resources would be so helpful. From my family to yours, thank you!

Hi there Hab27, first thing that should be worked out with Oncologist is Braf status ( which is a protein mutation) that pathology test tumor removed from lung will show if Braf + or Braf negative. Once this is know then choices are usually easier or more clear especially is Braf negative then Immunotherapy is the path to follow. Oncology team will have to make decision on single drug Pd-1 like Nivo or Pembro or combination of two drug called Ipi + Nivo (usually referred to as combination immunotherapy) which has a higher reponse rate but more side effects. Here is a pretty good link where a panel of leading oncologist talk about just this situation based on being wild type which means no Braf + mutation. Best Wishes!!! Ed https://www.onclive.com/peer-exchange/advanced-melanoma-paradigms/anti-p...

One more thing, the video is on Onclive and I can't remember if you will have to join to see video, no cost and no spam. Here is a link to same video on youtube. https://www.youtube.com/watch?time_continue=1&v=QtpXipl29gg&feature=emb_...

Ed - thank you so much for this information and for taking the time out of your Saturday to help a stranger. I can’t convey how helpful it is to learn this. I found the video very helpful too. All the best and massive thanks

First, so sorry that you and your mom are dealing with all this, Habs, but glad that you have reached out here as this forum is full of smart and caring peeps. Secondly, get away from that NP and NEVER go back!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! It is important to see a melanoma specialist or at least a local oncologist who is well versed in and has cared for many patients with melanoma using the most recently approved therapies - ie targeted or immunotherapies that have only been FDA approved since 2011.

It sounds as though when your mom was first diagnosed with cutaneous melanoma, she was advised correctly for that moment in time - get clear margins and follow up as best you can. I too was one of those peeps. I was diagnosed as Stage III melanoma (skin lesion and positive lymph node) in 2003. However, with no valid treatments available at the time, I had to "watch and wait". Sure enough, in 2010 I developed lung and brain mets. I had the right upper lobe of my lung removed. I had the brain met zapped with localized radiation. And though there were no valid treatments approved - STILL!!! I was able to get into an immunotherapy trial. I have been NED (no evidence of melanoma) ever since with no further treatment. AND - best of all - I am not alone!!!!

Here is a link to a primer I put together that covers all current melanoma treatments - https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melan... There is also a glossary linked at the end that explains terms and acronyms. Yes, all of this sounds like a foreign at the start!

Yes, targeted therapies (therapies that only work if your tumor is BRAF positive - so you need to make sure she is being tested) and immunotherapies work when there is disease present. The important thing is to get treatment started!!!! (Old fashioned chemo doesn't work in melanoma.) It is also possible that your mom may benefit by localized radiation to the tumor COMBINED with one of these therapies. (Radiation alone is not so helpful.) But again - make sure she is seeing an oncologist with experience in melanoma. Many of us travel for our care if there is no oncologist well versed in this care locally. Hopefully, you can find appropriate care at home. But, finding someone familiar with the treatments I note can make a difference between life and death.

Look over the info provided. I'm sure more melanoma peeps will chime in. Knowing that her condition is markedly similar to mine and that I am still here (as are many others!!!) may be the best treatment for your mom's anxiety though counseling is certainly helpful in some cases. Ask more questions as you have the need. I wish you and your mom my best. Celeste

Celeste. You are my hero. Thank you for taking the time to read and reply. You have given me so much hope that I will convey to my mom. This is exactly what she needs to hear right now. We’re very lucky to be close to a cancer center - now we wait for them to call and get these treatments going. Please accept the most heartfelt thanks and virtual hug from all of us. Your generosity to a complete stranger is unbelievable.

Metastic melanoma care seems to change every minute. There is air of research going in now and a lot has changed in the last ten years. Yes, it is a very serious diagnosis bit your NP is out of date. When I was originally diagnosed about 8 years at 2b, the data was predicting a 5% five year survival rate. That just isn’t the case any more. There are many people surviving for longer and longer periods and more and more people with NED for long periods. (No evidence of disease)

So, please find a melanoma specialist or oncologist with actively treats many melanoma patients. More than likely, she’ll be treated with one of the fancy new drugs.

Thank you so much. This is all very encouraging. She’s awaiting the genetic test and then will await an appointment at the cancer center here. Thanks for taking the time to help us!

Thank you so much. This is all very encouraging. She’s awaiting the genetic test and then will await an appointment at the cancer center here. Thanks for taking the time to help us!

Anonymous - (1/12/2020 - 3:28pm)

Definitely find a Melanoma specialist! I would recommend may getting a second opinion from cardio thoracic surgeon also. My first surgeon said my tumor was too close to aorta but second surgeon said no problem! Surgery is no fun but I think if they can get it out safely , that's the best start!

Thank you so much.
She actually was referred immediately to a thoracic surgeon. We keep hearing he is one of the best. A team of surgeons reviewed her case and deemed it too unsafe to operate and needs to be shrunk pre surgery.

The problem is her pain is climbing everyday. We all wish they cut it out when they found it, but the surgeon didn’t think it was melanoma from the CT so they waited over the holidays and it doubled in size. I think in her head it’s growing so that can’t help. Anyways must keep looking forward and staying positive.

Thanks again.

Dear Habs, the earlier posters have given you great advice and there is plenty of hope
If your mum is BRAF positive then the targeted therapies usually work quickly and will bring the tumour down in size
If not then you have the immunotherapy option which, hoping it works, can also reduce the tumour
Bubbles is a fan of radiation plus immunotherapy; there is also the possibility of intralesional injectiongs (TVEC) plus immunotherapy
But as many above have stressed, the key is to find a melanoma specialist - you need this more than a surgeon
The melanoma expert can put your mum on the right drugs which is key, the surgery can come a little later and if the meds work the surgery will be easier as the tumour smaller
So please find a melanoma specialist (and may be post your details under your profile, including which part of the world you live in)
good luck and best wishes Mark

Cheers Mark. Also super helpful. We’re in Vancouver BC Canada. My mother moved here to be closer to my newborn son in June, and I happen to live a 15 minute walk to the cancer agency here.

The surgeon has kept her in hospital (after cancelling the surgery when the tumour grew so quickly) until she gets an appointment with the cancer clinic. I’m not sure how to make sure it’s a melanoma specialist to be honest (up here we go where we are referred typically) but I will inquire once we have a contact.
We are so hopeful she has radiation at least for comfort as this tumour has caused immense pain in her back. It’s left upper lobe. (the team has struggled to manage it but we’re hopeful the complex pain team can prescribe a long acting pain drug tomorrow)
Massive thanks for taking the time to comment and here’s to hoping she’s BRAF positive.

Hi Habs,
I don't have anything to add to all the great information you got above, just wanted to say a couple of things:

1) the NP was completely wrong to say anything like that, in all the six years we've been at MD Anderson, never heard words like that.
2) You are a wonderful caregiver for your mom and you are doing everything right to advocate for her, great job! It's not an easy role, hugs.

Many hugs. As you get more information, this group can help you advocate even more.

Jackie <3