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Probable Stage IV at diagnosis - slow schedule

Probable Stage IV at diagnosis - slow schedule

Posted By
JeanD
11/1/2019 6:13am
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Replies: 6

Hi,

My wife was diagnosed in August 2019 with cutaneous malignant melanoma (mole removed and biopsied in May 2019, my wife had been complaining about it since last autumn) at the junction between the shoulder and the neck (Breslow thickness 1.4mm, ulcerated, mitotic index 2.2mm/sq). She’s had a wide local excision, and sentinel nodes removal and biopsy (one node in the neck, one in the armpit) on 02 September. Late September the results came back, three deposits in the nodes (biggest one: 2mm). She's had a whole-body CT scan on 06 October, the results, looked at quickly two weeks later, are a 5cm tumor in the left kidney and a 5mm tumor in the liver. Consultant said it was probably all fine, and nothing got done or even booked until yesterday (31 October) when the urology team decided the kidney tumor was quite likely a melanoma metastasis. She is now booked for a liver ultra-sound on 04 Oct and a kidney biopsy on 05 Oct. Two and a half years ago, she had an unrelated scan that showed both the kidney and liver to be clear. Kidney cancer, if it was not a melanoma met, is supposed to be slow growing.

The only person we have managed to talk to since yesterday's 'bad news' is a nurse (not specialised in cancer), who said the biopsy results would take 10 days and then surgery would likely be booked with an additional 4 weeks waiting time.

Bizarrely, we still do not know whether she is BRAF positive, in spite of the fact that D+T would then become the consultant's first choice if so (she agreed nivolumab would be dangerous to my wife given her history of auto-immune disease).

She's been complaining of worsening symptoms for a few months: near-constant fever 37.6-38°C (sorry for the non-US units!) in spite of no infection, weight loss (8% of her body weight, she was a very slim 19.6 BMI to start with) with no appetite pretty much ever, kidney pain that seems to worsen, near-constant fatigue. All dismissed as non-cancer related and not worth investigating either.

Additional info: she's 39, very susceptible to inflammatory / auto-immune issues, including her thyroid entirely non-functioning since her mid-twenties and a year-long severe auto-immune attacks to various organs. She's got a family history of skin cancer (mum, and melanoma for her grandmother).

We live in the UK.

***

The whole timeline seems absurdly slow to us, and especially the forecast timescale if kidney does turn out to be a metastasis. Does it sound reasonable to you people and / or in line with what you have experienced? Any advice?

Best wishes to everybody,
Jean

Sorry for what you and your wife are now dealing with, Jean. Hopefully they have the ball rolling now and will proceed with appropriate evaluation and treatment. I think targeted therapy with a BRAF/Mek combo sounds perfectly fine if she is BRAF positive. However, should you need them, many folks who have had adverse immune reactions to immunotherapy or pre-existing autoimmune disease CAN go on to tolerate immunotherapy very well with close observation. Here are many reports: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/03/toler...

For what it's worth. Celeste

Appreciate your thoughtful and well drafted responsed always.

Thank you for your answer Celeste. I had not seen https://onlinelibrary.wiley.com/doi/full/10.1002/art.40397 before, thank you. I'm not sure if that's really making a case in favor of taking immunotherapy in spite of immune conditions. Of one takes out the patients who died within a few months of starting treatment, the proportion of those having had grade 3-4 immune adverse events becomes 5 out of 6. Counting the quickly dead as successful no-IRAE feels wrong.

My wife is considering starting with nivolumab nonetheless, if she is indeed stage 4. My question was more in terms of timing, do things take that long in the US?

Hi Celeste,

I see you have also linked: https://www.ncbi.nlm.nih.gov/pubmed/28817445

The title and abstract look very promising, but I have not been able to access the article itself. Have you been able to read the whole article?

Thank you,
Jean

You can click on the link to the upper right (I believe) to view the article via the journal or ovid. I think I read it in total back in the day when I published that post...but I have slept since then! Yes, it is very true - side effects are far more difficult for those who have them than for the researchers who write about them. As a rattie since 2003, I have first hand experience with that. But, since melanoma and all its ramifications suck great big green hairy stinky wizard balls - we do what we can. Wishing you and your wife my best. C

It's all paying unfortunately, but thank you for the links.