mbrrna

Thank you Mark. Will definitely ask whether targeted therapy is an option for her, rather than additional surgery.

Sorry to hear about your difficulties getting the combo therapy. I think one of the worst parts of all this is the waiting… waiting for appointments, waiting for results, waiting for treatment. My thoughts are with you and your mom.

Hi Cindy. Thank you for your response and the article. As you say, acral is a tough one. Mom’s pretty reserved but we probably should be having a discussion about quality of life, versus quantity. She’s funny though and keeps moving the goal posts – after a bout with breast cancer, she said she’d be happy if she could live to 80, then after the melanoma, it was 87. Now at 87, she says 90 is a good time to go! She’s a fighter.

Hi there. Thank you for your reply. I’m coming from the same place as your mom. I will see if she’s open to speaking with a palliative doctor as well – tough questions to ask and an even harder decision to make. Thank you again.

Hi. Thanks for responding. I’m sorry your mom is in a similar situation. My mom’s being treated at Sunnybrook in Toronto. She is BRAF positive. I’ll ask about the targeted therapy and see if that’s an option. Wishing you the best. Thank you.

Thank you so much for the explanation Celeste. Mom has some shortness of breath if she walks, so will keep an eye on it. Unfortunately she's been pretty much confined to bed or a chair since the surgery in February, so we thought it was probably due to inactivity (her foot has still not healed completely from the skin graft).

Thanks again. I can't tell you how much I appreciate all the help you and the other warriors provide here – I'm an avid daily reader!

Amanda

 

Thank you – I think there are some possible options. Unfortunately she doesn't have private insurance.

Thank you for the info. I've gone through all the options – seems like there may be a something if she has the BRAF V600 positive mutation.  Will have to ask.

Hi!  I saw on another post that your mom is now NED and just wanted to touch base with you – that's such wonderful news!  I'm so happy for you.

My mom had her second Keytruda today and seems to be coping well – no real side effects after the first one, just tired. 

She is still struggling with pain from the surgery though – especially the donor site area on her thigh.  She's now been referred to a palliative care team as they specialize in pain management, so hopefully she'll start to feel better soon. She hasn't been able to put the foot on the floor at all, even though the doctor wanted her to start walking on the heel.  It's still not healed completely.

Anyway, I just wanted to say congrats to you and your mom.  It's nice to hear good news!

Thank you – will let you know how she does.  It'll be interesting to see how her immune system kicks in – mom has had alopecia universalis for the past 30 years (total hair loss), whereby the immune system mistakenly attacked the hair follicles.

Good luck at the next scan… hoping for the best for your mom.

There's nothing worse than your mom being sick, is there?  From what I understand, they have no plans to do any biopsies and are just relying on the results of the PET scan – the doctor basically said the whole right side of her abdomen is involved.  That's why I was wondering about the seriousness of it just being in the lymph nodes, as the doctors seem rather pessimistic.  I'll ask the doctor about the biopsy and DNA workup at the next visit.  I'll also check out the local foot store.  Many thanks.

My best to you and your mom.

Thanks for the info.  I'm documenting the healing with pics and almost faint everytime I look at my phone.  I've had to do the daily dressing changes which confirms my belief that I could never be a nurse. 😉 Initially the plastic surgeon proposed doing a more extensive "flap" surgery instead of a skin graft because of concerns that the skin would be too thin and she could damage it walking (the donor site was also mom's thigh and was actually more painful than the tumor site).  However, based on the CT results, she decided just to do the graft, which sounded ominous to us. In light of the success of the new treatments, it remains to be seen whether this was the right choice.  Sounds like your mom's doctors were way more aggressive surgically.  We don't have the pathology report yet, but the oncologist said even if the margins aren't clear, they would just stick to the Keytruda and not do any more surgery. 

So, we're five weeks into the healing now and it sounds like another two months before she'll be walking, based on your mom's experience. We have the walker and wheelchair too. We were talking about adapting her shoes – what sort of cushion did you get?