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Lymph node - life changes so quickly

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By *copto OP   Couple
50 weeks ago

Côte d'Azur & Great Yarmouth

An old topic resurrected, but just might give encouragement to anybody affected:

In May 1922 an untreated melanoma above my right ankle had already metastisised before I bothered to go to a doctor. Biopsy confirmed it was already Stage IV, and brain- and CT-scans next morning revealed the cancer had spread through the lymphatic system to the popliteal lymph nodes behind the right knee and was on its way upwards.

The dermatologist who’d carried out the biopsy tried to cut away as much as possible but was pretty pessimistic, and my local GP suggested I might think about “getting my affairs in order”.

But I’m lucky enough to be reasonably near a Hôpital d'Instruction des Armées - since Napoléon the French have really looked after their armed forces and their hospitals are the best - and the Professor I was able consult was of the opinion that since the cancer was BRAF negative and NRAS positive I was an ideal candidate for long-term immunotherapy.

Naturally, I ‘phoned my GP in the UK but his advice was that if I did return to the UK the NHS wouldn’t take any notice of the French findings, they’d start from scratch and wouldn’t be so quick. And Pembrolizumab/Keytruda being so expensive (we’re talking up to ten grand for each intravenous procedure) I might have to “make do with” chemotherapy. As I was already “in the French system” I’d do better to stay in it.

Usual dosage is 400 mg Pembrolizumab every 6 weeks and by December last year I’d had three sessions of immuno. But a PET-scan in July showed the cancer had spread to the inguinal lymph nodes in the groin. I could actually feel a lump the size of a large marble under the skin, and the PET-scan images showed up the knee and groin lymph nodes as black spots.

Immuno treatment has continued and I’m going for my twelfth session next Tuesday before we fly back to the UK for Christmas. My health insurance company DID baulk at the cost, but has paid up so far.

But guess what! Last week’s PET-scan (“examen comparé à la TEP du 17/07/2023”) showed NO black spots and the report concludes: “Absence de foyer hypermétabolique suspect de malignité”.

What that means for the continuation of treatment I’ll find out next Tuesday when I see the Prof., but could this be a cancer story with a happy ending?

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By *dinburghWomanWoman
50 weeks ago

Edinburgh

Wishing you all the luck in the world.

I was diagnosed with breast cancer in 2006 and my doctor said nowadays I have no more risk of getting it than anyone else

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By *melie LALWoman
50 weeks ago

Peterborough

Yep, unfortunately the NHS has arrogance within and talk about doing things from scratch. I'm glad your GP was transparent.

I had an arrogant neurologist ask me why I thought they'd take any notice of an international's university hospital neurological findings. They in the NHS would do their own investigations. These investigations never happened. All talk, ignorance and arrogance!

Your story, fingers crossed, continues to be positive and non NHS -lead.

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By *loss aka Miss JonesWoman
50 weeks ago

south coast IOW

Best of luck to you. And to any other fabbers who have experienced this horrific disease. I hate Cancer and know what a toll it can take on a person outside the physical. I wish you all the luck in the world

Xxxxxxxxxxxxxxxxxxxx

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By *ed VoluptaWoman
50 weeks ago

Wirral.

Sounds like fantastic news, OP!

Hope you have a happy & healthy future xx

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By *ickychef1Man
50 weeks ago

Greenford

Wishing you the best of luck friend. I..Ricky...have a meningola on my brain...due to strikes etc I've been left in the dark since 2020....luckily I've had no symptoms. Dr said it's not cancer thank god...but they have to keep an eye on it as it may grow.

Stay strong and positive friend....I'm Buddhist and believe our thoughts etc can help....

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By *ools and the brainCouple
50 weeks ago

couple, us we him her.

Wishing you the very best healing thoughts OP, stay strong and blessings upon you

And the same for others struggling with health issues.

Peace and love

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By *ickychef1Man
50 weeks ago

Greenford


"Wishing you the very best healing thoughts OP, stay strong and blessings upon you

And the same for others struggling with health issues.

Peace and love "

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By *uiet LightMan
50 weeks ago

Hove

A very humbling post to read, thank for sharing OP.

I hope you have a peaceful festive period with your family and wishing you the very best with everything in 2024

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By *heoneandonlyEJCouple
50 weeks ago

Rotherham

Wishing you all the very best x

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By *onnyosMan
50 weeks ago

oswestry

I've just finished treatment for lymphoma and lung cancer it really is an evil disease but I am in remission so I wish you and your family everything that you deserve in life health and happiness stay positive x

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By (user no longer on site)
50 weeks ago

Sending and hugs OP x

I was diagnosed with melanoma last March'22, just below my right knee. My GP spotted it during my routine smear. Was fast tracked and had surgery within 3 weeks, then another 3 weeks for biopsy results to say the cancer had not spread beyond the site of the melanoma. I still have pain and nerve damage in my leg but it's starting to heal finally.

Keeping my fingers crossed for you x

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By (user no longer on site)
50 weeks ago

and hugs to everyone who has gone through, or is going through this. Stay strong & F**k cancer! x

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By (user no longer on site)
50 weeks ago

8 years ago this week since the cancer rollercoaster started. 43 lymph nodes removed. Lymphoedema is now part and parcel of everyday life.

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By *olyester123Couple
50 weeks ago

Cambridgeshire

I have chronic mylohyoid leukemia and thanks to our wonderful nhs and drugs it is well under control so I count myself lucky ,

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By *i1971Man
50 weeks ago

Cornwall

Best wishes OP.

I have a friend having surgery for melanoma and will have the Xmas waiting to find out if it has spread

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By (user no longer on site)
50 weeks ago

Skin cancer on my face....horrid and dangerous. Several ops leaving scarring. The alternative was of course far worse. Beware the danger of UV.

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By *ormalfornorfolkMan
50 weeks ago

Norwich

Good luck OP, I hope your recovery continues.

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By *ungBlackTopMan
50 weeks ago

salford

We use those drugs in the UK all the time. If your cancer PDL1 and CPS is high you will be eligible for it in the UK 100% regardless of money. Immunotherapy can be used as maintenance for as long as possible if your cancer remains responsive and you're not showing PD on your 3 monthly scans.

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By *onathan14Man
50 weeks ago

Liverpool

Naughty shit this cancer business

I have MDS

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By (user no longer on site)
50 weeks ago


"Skin cancer on my face....horrid and dangerous. Several ops leaving scarring. The alternative was of course far worse. Beware the danger of UV. "

Had it twice myself, luckily it was the least aggressive you can get.

Best wishes, OP

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By *otgirl32Woman
50 weeks ago

Ashton Under Lyne


"An old topic resurrected, but just might give encouragement to anybody affected:

In May 1922 an untreated melanoma above my right ankle had already metastisised before I bothered to go to a doctor. Biopsy confirmed it was already Stage IV, and brain- and CT-scans next morning revealed the cancer had spread through the lymphatic system to the popliteal lymph nodes behind the right knee and was on its way upwards.

The dermatologist who’d carried out the biopsy tried to cut away as much as possible but was pretty pessimistic, and my local GP suggested I might think about “getting my affairs in order”.

But I’m lucky enough to be reasonably near a Hôpital d'Instruction des Armées - since Napoléon the French have really looked after their armed forces and their hospitals are the best - and the Professor I was able consult was of the opinion that since the cancer was BRAF negative and NRAS positive I was an ideal candidate for long-term immunotherapy.

Naturally, I ‘phoned my GP in the UK but his advice was that if I did return to the UK the NHS wouldn’t take any notice of the French findings, they’d start from scratch and wouldn’t be so quick. And Pembrolizumab/Keytruda being so expensive (we’re talking up to ten grand for each intravenous procedure) I might have to “make do with” chemotherapy. As I was already “in the French system” I’d do better to stay in it.

Usual dosage is 400 mg Pembrolizumab every 6 weeks and by December last year I’d had three sessions of immuno. But a PET-scan in July showed the cancer had spread to the inguinal lymph nodes in the groin. I could actually feel a lump the size of a large marble under the skin, and the PET-scan images showed up the knee and groin lymph nodes as black spots.

Immuno treatment has continued and I’m going for my twelfth session next Tuesday before we fly back to the UK for Christmas. My health insurance company DID baulk at the cost, but has paid up so far.

But guess what! Last week’s PET-scan (“examen comparé à la TEP du 17/07/2023”) showed NO black spots and the report concludes: “Absence de foyer hypermétabolique suspect de malignité”.

What that means for the continuation of treatment I’ll find out next Tuesday when I see the Prof., but could this be a cancer story with a happy ending?"

Genuinely wishing you ALL the best and full recovery hun!

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By *melie LALWoman
50 weeks ago

Peterborough

I hope you people suffering from cancer or at high risk, have good support networks. If not, do look into specific charities. Practical advice/help and forums may be available.

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By (user no longer on site)
50 weeks ago


"I hope you people suffering from cancer or at high risk, have good support networks. If not, do look into specific charities. Practical advice/help and forums may be available."

Yep, I relied heavily on MacMillan when I first started going through the wringer. Now use a specific group for my type of cancer, as I'm 8 years in I can hopefully give advise to the newbies in the group too. P.

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By *ervice2000Man
50 weeks ago

derby


"Sending and hugs OP x

I was diagnosed with melanoma last March'22, just below my right knee. My GP spotted it during my routine smear. Was fast tracked and had surgery within 3 weeks, then another 3 weeks for biopsy results to say the cancer had not spread beyond the site of the melanoma. I still have pain and nerve damage in my leg but it's starting to heal finally.

Keeping my fingers crossed for you x"

Thats a random place to get it!! What was your sypmtoms? X

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By *ysteryDocMan
49 weeks ago

Cambridge

Hey glad pembro worked for you. Melanoma is actually responding fairly well to multiple examples of immunotherapy. If you want to reach out privately I can point you to a few clinical trials.

There’s very good gone in Spain right now. Not sure they are taking new patients but looks like you’re off to a great start with PD-1 anyways.

Ps. Nhs is the worst with immunotherapy. It’s a total disgrace.

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