Melanoma

I was similar to you in I had a nodular melanoma on my shoulder which also grew large and bleeding and leaking green stuff before it was removed. My scans showed up large lymph nodes underneath my arm but when they tried biopsy that came up negative. They were still suspicious so recommended having all lymph nodes removed which they did. I was told that some of mine was black and as well as live cancer also found dead cancer cells both in the lymph node and where they removed the melanoma. I am now having immunotherapy. I do have some side effects but as I was suffering from long Covid before starting treatment it is hard to say which is side effects and what is that. I have been off sick from work and had to start claiming benefits as used up all my sick pay but want to put all my energy into healing and not make myself exhausted by trying to work.

Hi Sou85a, 

Many thanks for your reply and for detailing your personnal experience both from the Melanoma and also the long covid, I hope your health improves allowing you to fight of both conditions.

May I ask how long you have been on the immunotherapy treatment and what is the process ?

I have a planned meeting with my care team sometime in the coming days during which i guess they will wish to discuss additional treatment programes including drugs and CT/MRI scans, so any information would be appreciated as unfortunately im finding it difficult to get specific information from any source in my local area.

Im also finding it still to be a taboo subject to openly discuss and although I appreciate each persons journey to be different the more open and transparent we all are regarding our cancer and what medication and surgical procedures are used and how those medicines and procedures effects us on an emotional and physical level and how our families cope the more prepared we will be for the fight ahead.   

I have had 4 surgeries and numerious CT and MRI scans plus biopsies over the past 18 months and with the exception of the 1st mole on my back which was opeated on within 7 days of finding it and with all due restect to the surgical and care teams involved the other surgeries have been a case of chasing rather than catching and stopping this cancer monster from spreading further until now im confirmed stage 3 metastasis and nobody knows where its gone...yes its a worry and does play on my mind a lot not only because of what i am going through but also for my families future including the part i play in that future or not.

I started it at the end of august and had 3 treatments so far another due soon. There is lots of different types but mine is Iv every 3 weeks. As I am difficult to get cannulas in I had a picc line fitted. Before each treatment I have bloods done. The first few treatments were done at the hospital but this next one I am trying the treatment at home service. I know it can be hard waiting as there was times I was left waiting and wondering what was happening especially in the beginning as started in one hospital trust but they needed to send me to another to get treatment 

Hi. I’m stage 3c it was positive in 2 out of 4 nodes from my SLNB and I also had a lump appear near my original scar that a pet scan confirmed melanoma. Just had that removed. I’m on pembro immunotherapy had two lots mine are 6 weeks apart. I haven’t had many side effects  I had a bad stomach ache after the first dose for 2 days. Then just recently two tingly fingers!! Constant pins and needles but weirdly it’s quite bearable  good luck with what ever you have. 

Hi Tash_28

Thanks for your reply to my post.

What does the "c" after stage represent?

I originally had a melanoma removed which was followed a month or so later by a wide local excision.

I later had the pet scan prior to SLNB which showed negative but was later removed during surgery that later pathology showed to be positive. I again had another pet scan that showed possible left and right axillary nodes to be cancerous, biopsy was also performed this was later proved positive and I’m just out of surgery after right side ALND (axillary lymph node removal). Surgical team propose additional biopsy on left ALN and also a second melanoma site on my right shoulder. Also planned is targeted meds which involves immunotherapy. I also have peripheral neuropathy so I’m very used to tingling and pins and needles! Think I have a long way to go but have learned its step by step, anyway hope your treatment goes well for you good luck. 

Hi Sou85a, My daughter has the same issues with cannulas and she to also had a picc line fitted that later had to be removed due to complications which was all a very worrying time for everyone. I hope in your case your picc line works good and the side effects of the medication are not to severe. Good luck also with the home treatment service which i know from my daughters treatment (not cancer related) was more elaxing with recovery and side effects less severe. im sure for me that i will be receiving more meaningful information as needs require and treatent plans progress and to that end have an appointment this afternoon with my treatment team so hoping for moree information and the opportunity to ask a few of the many questions i have buzzing around my head. Anyway good luck with your treatment.

Hi, I thought id add a brief update.

I’m now back in hospital receiving some urgent care after my ALND wound became infected. A lot of swelling and the entire area changed to a deep purple colour. Fluids have been drained, I’ve had a CT scan with a large selection of medical staff all trying to help. I also had on the 1st day a very high temperature which thankfully has now fallen to within normal parameters thanks in part to the strong antibiotics via drip together with oral Anti-inflammatories.

Day 2 and more fluids being drained and more antibiotics, swelling starting to drop and temperature normal as is BP and blood sugars.There still remains the possibility of surgical intervention should my temperature increase or the inflation does not recede.

The cause of all this was a totally unavoidable error by trained medical staff when removing a wound manager dressing 12 days ago. impatience together with improper action resulted in localised skin damage where adhesive tape which I’m not allergic to had been used to secure the would manger. this was in close proximity to my surgical scar, anyway a localised rash developed under the dressing building all the while and was only discovered when my wife removed the dressing. By this time I was beginning to feel unwell and when she advised me the area was looking a bit red and swollen I decided best to notify the hospital who advised I return immediately.