Stage III choices

This moderated forum is to support the needs of patients with stage III melanoma, as well as to answer questions about treatment options and what to expect.

Stage III choices

Postby Catherine Poole » Sat Oct 22, 2016 7:05 am

So this still sucks for you stage III patients: Ipi at 10mg, or interferon or watch and wait. Can some of you please weigh in and tell me what you are doing and how it is going?
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Stage III choices

Postby hope629 » Fri Oct 28, 2016 12:53 pm

Hi Catherine,

I chosen the "wait and watch" approach (Stage 3A) after my surgeries during the diagnosis process. I've been NED for 2 years and 2 months ( :D ) and see my dermatologist and oncologist every 6 months. I receive scans(CT of ab/pelvis/chest) and blood-work every 6 months. With the way the scheduling falls, I usually see one of them every 3-4 months which is nice and they both do full body checks at every appointment. My next scan is scheduled for January 9th along with oncologist appointment on January 12th; as long as I remain NED, my oncologist and I have talked about going off birth control and trying for another baby. She wants me closer to 3 years NED which is fine and also means spreading out the time between scans to 9-12 months. My little guy is 2 years old and keeps us plenty of busy. At the same time though, we don't want to live our lives in the 'melanoma shadow'.

All of my medical care is done at Abramson Cancer Center at Penn Medicine (Dr. Lynn Schuchter and Dr. Emily Y. Chu). I'm very happy with my team and plan. That does not mean I do not get anxiety as an appointment date comes closer but I have been better with managing those feelings and trying to stay in the present.

I have my dermatologist appointment on November 1st, so hopefully everything is clear there and I can enjoy the holiday season with family and friends. Best wishes to everyone.

Danielle
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Re: Stage III choices

Postby Linny » Sat Oct 29, 2016 8:37 am

I was on the MAGE Derma clinical trial, which was closed because it did not meet its primary or secondary endpoints. When I was diagnosed in 2010 my only options were Interferon, surveillance (watch & wait), or clinical trial.

I chose the clinical trial because it seemed to be a nice combo of getting the vaccine (2/3 chance, which seemed like decent odds) plus also getting the surveillance. To me, the worst case scenario was that if I ended up with the placebo or they closed the trial, I would have the surveillance, which was my second choice.

So now I am doing surveillance by default. :D

And, so far, so good! I am coming up on 6 years NED.

I have to now make a decision as to whether I want to continue getting a CT scan every 6 months or switch to every 12 months and see the doc every 6. I still get anxiety at scan time, though it's subsided a lot. What helps me get through scan time is reminding myself that the longer I go without a recurrence the less the odds are of having a recurrence. My next scan is in February.
Stage III, Unknown Primary; 1 positive node in left axilla
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Re: Stage III choices

Postby Catherine Poole » Sun Oct 30, 2016 7:10 am

Many of our scientific advisory board agree that watch and wait, or close surveillance is a viable option. To some, it seems very inactive, and most doctors want to prescribe something! I think for the higher risk folks at IIIC the trials may be worth a shot. Looking at one now that I will post later with more information. Hang in there, that previsit anxiety is tough to endure, I know!
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Stage III choices

Postby markoasis » Sun Oct 30, 2016 8:44 am

From Mark. (new poster)
Stage IIIB, 18 months NED.

Yes, in the absence of many treatment options, are there other things that we can do? Perhaps, with a critical eye and sorting out scientific opinion from Internet hype, it is possible to add a few things to our arsenal? At a basic level, nobody would disagree that keeping fit and eating well are beneficial to our health, and may have a positive effect on the immune system. We are talking here about reducing the risk of recurrence, not the fighting of active disease. If I get a recurrence 6 months post diagnosis maybe lifestyle changes don’t have time to do anything, but what if I am still going after 10 years (which is what we all want)? Can things like those I list below give me a few percentage points advantage. What do you think?

THINGS I HAVE DONE – AS FOLLOWS:

Vitamin D supplement. Tested for vitamin D levels. Mine were above average so no action required. Apparently a sub-set of melanoma sufferers have abnormally low vitamin D levels, and if your vitamin D is low, you can modify your diet or take supplements. For general good health, and remembering that for some patients melanoma may be somehow linked with very low vitamin D levels.

BCG vaccination. To boost immune system. This had some popularity in the past in melanoma treatment but remains controversial. I had a PPD skin test which was totally negative (I had no active reaction remaining from the BCG tuberculosis vaccination I had in my youth), indicating that I could benefit from the boost to my immune system that a new BCG vaccine would give. I had the dose split below each armpit and had red swelling at the sites for weeks, so my immune system certainly reacted. No guarantee that it did me any good, but it was cheap and as a bonus I am presumably re-immunised against TB.

Low-dose Aspirin. There are medical trails going on these days investigating long-term use of Aspirin in reducing cancer occurrence generally, and scientific papers suggesting pathways by which Aspirin might interact more specifically with melanoma. None of my doctors suggested this to me directly, but after I mentioned it they all said that low-dose Aspirin has many health benefits and taking it was all to the good (there can be some side effects and for general health low-dose Aspirin is not usually recommended until you pass 50, but I am 48 so nearly there). In the on-going UK “Add Aspirin” trial the three treatment groups are 300mg/day, 100mg/day and 0mg/day. I take 200mg/day, averaging the two trail doses.

Exercise. We all know that exercise keeps us healthy, and that keeping fit is part of fighting melanoma. I try to run every day before work and usually fit in 3 or 4 times a week. I work at a desk, so probably could do more on this front.

Diet. I changed this a lot after my diagnosis. My doctors did not suggest any dietary changes but did not discourage me. The usual list comes into play - of foods that may help to reduce the incidence of cancers, and also foods to avoid which may increase risk. But not listening too much to superfood crazes. As a bonus I should be fitter and less likely to get a stroke or heart-attack, and who-knows I could end up living longer. I bend the rules a bit to be practical and stay happy, but certainly avoiding the junk food, processed meats and refined carbohydrates that encourage inflammation. No red meat, occasional oily fish (like salmon) a good thing, a bit of chicken allowed. Very little dairy, bread, potatoes, rice. But quinoa and sweet potatoes are good. No refined sugar (no cake!). Plenty of vegetables, especially cruciferous stuff like broccoli, cauliflower and kale. Cooked breakfast is a one-pot of tomatoes, asparagus, shitake/oyster mushrooms, turmeric + black pepper, chilli, rosemary, ginger and garlic cooked in olive oil. Salad for lunch with everything in it, including (depending what I can get) greens (such as baby kale mix), broccoli, parsley, mint, basil, watercress, peppers (aka capsicum), celery, carrots, tomatoes, beetroot, garlic, avocado, blueberries, pomegranate, walnuts, tossed with flax oil and apple cider vinegar. Lots of green tea, occasional (not every day) small glass of red wine with food and black coffee. Brazil nuts. Almonds. Raspberries. Sage. Rehydrated seaweed mixed in to main meals.
Also I try to avoid too much citrus fruits (like orange juice) because they contain chemicals which increase skin sensitivity to sunlight and may increase the risk of getting new primary melanomas. Grapefruit and Mexican limes seem particularly high. One catch-22 is that I take my green tea with lemon because it is supposed to help take-up of the active ingredients (and it tastes better). Concentration of the sun sensitising chemicals in ordinary lemons seems not so high, so I am making the trade-off and risking it.

THINGS I HAVE NOT DONE – AS FOLLOWS:
Meditation, Yoga, etc. I have an open mind about this. I think it can really influence people’s mental and physical wellbeing in a positive way – contributing to good health and a strong immune system. Just I haven’t gone that way myself so far.


On the other hand, things which some people “On The Internet” are talking about but I found no scientific support for, and could probably even be harmful.

Melatonin supplement. I saw on message boards that some people with melanoma were self-medicating with melatonin because of its anti-oxidant (and purportedly anti-cancer) properties. Depending where you live melatonin can be sold over-the-counter as anti-jetlag medication. Melatonin is produced by the body when we sleep at night. Individuals with disrupted sleep patterns, like shift workers, have higher incidence of diseases, including cancers, so people work the logic backwards. Melatonin does seem to play an important role in long-term health, and there is some interesting research looking at its anti-cancer benefits, but I don't think it is something to play around with without medical supervision. The fact that melatonin is a hormone means there can be feedback in the body regulating it – so if you take supplementary melatonin, your body might compensate by producing less itself. The best way to make sure your body has the correct level of melatonin is to have sufficient nightly sleep in a dark room. This is the thing that I fail on most often - not giving myself enough sleep. I should add "A good night’s sleep" to the list of positive things.

Antioxidants & vitamin supplements. I was surprised that there isn’t really any clear scientific evidence showing that antioxidants are good for you, and there isn’t really a clear mechanism for how they would fight cancer in the body. Foods that CONTAIN antioxidants ARE good for your health (back to good diet – see above) but extracting antioxidants and taking them as supplements doesn’t seem to help. Searching for the latest / greatest anti-oxidant food is a bit pointless. Likewise eating fresh foods with vitamins in IS good for you, but taking vitamin pills doesn’t add anything.

Vitamin C. Some expansive claims are made for vitamin C but the more extreme seem unfounded. If there is some lesser underlying benefit in vitamin C, then my healthy diet (see above) should already be giving me a high natural intake. I don’t see good enough evidence to change diet further or supplement.

Alkaline diet. Nope.

Possible to find other diets and regimes, but all debunked as quackery, so I stop there before this post gets even longer. Thanks for reading to the end.

Mark.
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Re: Stage III choices

Postby Tritone88 » Sat Mar 11, 2017 6:25 pm

Looking at this decision square in the eye.

Coming off of surgery for stage IIIb - one node in groin. Had superficial inguinal dissection and all other 14 nodes were negative.

Messing with my immune system via Ippi scares the crap out of me..no pun intended. My oncologist is a melanoma specialist and our adjuvant discussion is coming up next week. Quality of life trumps quantity in my way of thinking. Don't know how I'm going to make this call and be content that I made the right choice...
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Re: Stage III choices

Postby jennunicorn » Sat Mar 11, 2017 8:28 pm

Hey Tritone88,

I totally understand the fear of Ipi, I will say though that not everyone experiences the bad side effects. I am one of those people (was 3b too at diagnosis) and I know others like me as well. Observation instead of doing an adjuvant treatment is still a good choice and a choice that many in your shoes have made and many have never had a reccurence, so surgery took care of it for them. You could be one of those too. Another option could be a clinical trial, if you wanted to try and get on Nivo or Pembro which have less of a chance of a severe side effect compared with Ipi. Adjuvant Ipi didn't work for me, even though I didn't get any bad side effects from doing the 10mg dose, I did 6 infusions and then after a scan found out that melanoma was back. I then decided to go on Ipi/Nivo combo (since its response rates are so high).. so I had 4 more Ipi infusions at the 3mg dose. Still, never had a severe side effect.. the worst I had was a 2 week fever and high liver enzymes. Everything went back to normal. I'm on Nivo only infusions now... and a recent scan showed NO activity... so I'm almost back to NED status.

Basically it's a totally personal choice and whatever choice you make will be the best choice for YOU.

All the best,
Jenn
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Re: Stage III choices

Postby Tritone88 » Sat Mar 11, 2017 10:07 pm

Thank you, Jenn.

Best wishes and prayers for your continued good reports.
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Re: Stage III choices

Postby LauraleaT » Sun Mar 12, 2017 10:39 pm

I have decided on and signed up for the S1401 Clinical trial comparing either ipi to pembrlizumab Doing all my work up this coming week, then I will be randomized. I've had bilateral axillary node dissection, total of 4 positive nodes, 2 on each side.
I'll let you know how it goes!
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Re: Stage III choices

Postby bcbcbc55 » Wed Mar 29, 2017 1:46 am

Will have 4th yervoy (IPI) treatment next week for stage 3B. Have had very few side effects!! None after 1st treatment then some fatigue after 2nd and 3rd. Very little nausea, nothing else. After 4th treatment will begin maint treatments every 3 months Good luck to all

After 4th treatment had side effects that put me in hospital for 5 days. Peripheral Neuropathy, numbness and weakness in feet and legs. STOPPED YERVOY. Now walking with cane and doing physical therapy. 7/1/17
Last edited by bcbcbc55 on Sat Jul 01, 2017 7:09 am, edited 1 time in total.
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