› Forums › General Melanoma Community › Just diagnosed stageIV in left lung.
- This topic has 6 replies, 4 voices, and was last updated 7 years, 4 months ago by Bubbles.
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- April 29, 2017 at 5:53 pm
Hello all, just found out this past Tuesday that my original melanoma on face has spread to left lung just over 3 x 3 cm, scared to death! PET scheduled for next Wednesday. My fear is I just started a buisness and I do not have insurance and have no idea what direction to go. My wife is a mess, any suggestions is much appreciated
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- April 29, 2017 at 7:26 pm
I would try and get in a clinical trial. Without insurance I am not sure what you qualify for. At least with a clinical trial you have a chance of getting the real medication.
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- April 29, 2017 at 7:48 pm
Not a bad idea. But, clinical trials are not often free. I was in one for years and either I or my insurance had to pay for everything except the drug…which IS something…but that means I had to pay for every required lab, scan, tubing, hosp/clinic and doctor charges, etc. However, if the trial is through the NIH…more of that may be paid for. c
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- April 29, 2017 at 7:45 pm
Sorry, Joe. Melanoma sucks great big hairy green wizard balls!!!
A few questions: How do you know the lung mass is melanoma? Have you already had a biopsy? Have you seen a melanoma specialist? Have you seen a surgeon? Did you have the melanoma to your face tested for BRAF status?
I ask some of that because it will be important in determining the treatment path you choose. The other thing is, if you are without insurance…and really even if you had insurance….you need to get the radiographic studies that will serve you best. I'd hate for you to get a PET scan, only to have the surgeon you end up using (if surgery is even what you plan to do) tell you they want a CT instead.
Here is some basic intel:
1. Surgery remains a good choice for melanoma…cause if a lesion is gone….that is an immediate decrease in your tumor burden…always a good thing. However, if by chance you are thinking of a trial (and you have plenty of options without doing that) they sometimes require "measureable disease" so the tumor would need to stay.
2. Radiation is a good option in melanoma IF (!!!!!) it is combined with immunotherapy.
3. Immunotherapy:
These are treatments that push our immune systems into action. Side effects are usually related to an "over activation" of our immune system. Common side effects = fatigue, rash, joint pain. More complicated side effects are inflammation in the lungs or colon, problems with thyroid function, as well as others. Response can take a minute. Work best with the lowest tumor burden.
ipilimumab (Yervoy, often called ipi here) – an anti-CTLA4 monoclonal anti-body. Given IV. About 15% response rate. Responses can be durable (lasting). More side effects than anti-PD-1 products.
Pembrolizumab (Keytruda) and Nivolizumab (Opdivo) are both anti-PD-1 products. Fewer side effects than ipi. Work about the same with approx 40% response rate. Responses can be durable.
ipi/nivo combo – combo of products as noted above. More side effects than anti-PD-1 alone due to the bad boy ipi, but with greater response rate – around 50+%.
4. Targeted therapy: BRAF inhibitors. Work incredibly well for folks who are BRAF positive. About an 80-90% response rate. Downside…responses are not often durable. Folks often recur in about 6-9 months as tumors learn to work around treatment. There are exceptions to this and those who have maintained responses on these drugs for years. They are always given with a MEK inhibitor…as that combo will decrease side effects and extend response times. Side effects are often fevers among other things. Sometimes these drugs are used to have a rapid decrease in tumor burden and the patient is then switched to immunotherapy before resistance develops.
5. Intralesional therapies – there are several…need to have an accessible tumor for injection.
I guess that's pretty much the basics. You can use the search bubble on my blog to find more info if you wish. Many helpful folks are on this forum. Ask if you have more specific questions. I wish you my best. Celeste
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- April 30, 2017 at 1:02 am
Thank you all for you support, the melanoma on my face was just Over 4mm. Sentinel node biopsy was negative. That was 2001.last week while in the hospital for Diverticulitis the ct showed 3×3+cm mass in lung. They performed biopsy while in the hospital and confirmed Tuesday it was melanoma. I am supposed to see a thoracic surgeon. I have met with oncologist but not a melanoma specialist. I did see specialist in 2001 but he did not recommend any further treatment. My current oncologist says after surgery, would be treatments. -
- April 30, 2017 at 2:41 am
Okay. In 2001 there were no real treatments for melanoma…(the ones I listed have become FDA approved just since 2011 forward)…and since you didn't have a positive node….you probably wouldn't have systemic treatment recommended even today. Seeing a thoracic surgeon sounds good. Make sure your are doing the studies he recommends. Treatment after the surgery sounds reasonable. Hang in there. c
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- April 29, 2017 at 8:17 pm
I'm sorry, Joe. That's a terrible position to be in. Even with insurance, the cost of treatment can be a burden. Fortunately, Bristol Myers Squibb and other drug manufacturers have programs that you can apply for, where they will donate your medication. Also, if you have no health insurance and don’t qualify for coverage through Medicaid, you can get low-cost health care at a nearby community health center. How much you pay depends on your income. Community health centers are located in both urban and rural areas. They can provide general primary care as well as referrals to specialized care.
The physician's office that I was an It manager for was part of this program. They were very caring, offered quality medical care, and employed social workers to help you apply for free or subsidized medication. There is help available. The link below will help you to locate a nearby clinic.
You can go to Healthcare.gov and search for Community Health centers or you can copy and paste the link below into your browser window to find a clinic near you.
https://findahealthcenter.hrsa.gov/index.html
Also, if you are a veteran, look into VA Health Care. We have always known that my husband qualified for VA Health Care, but we were afraid that if we enrolled him, we would not be able to continue seeing his current doctors and that it might affect his existing coverage. After checking into it, we found that is not the case and he now has an appointment with them to provide his history and get established so they can be ab additional resource for us if we run out of options in the future.
Please know that my prayers will be with you and your wife. Please keep us updated here. This community has been a valuable resource for me and I fell that it can be for you as well. When my own strength and faith is running low I find comfort here, I hope that you will as well. In addition to comfort and support, you will find a wealth of knowledge, such as the excellent response from Celeste.
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