Coming Off Treatment

Posted By
sister of patient
6/12/2018 9:12pm
View other posts by
Replies: 13

Hey all,

Good news up here - my sister Leisa is scheduled to conclude 2 years of immunotherapy with last infusion on June 22. She's a bit nervous about it but I'm so happy for her!!

She's right on the "sweet spot" as far as timing is concerned too (from my understanding of it), two years of immuno in total and NED for the last year. 

So, a couple of things in case the info is of use to anyone:

She began a steroid taper again about 4 weeks ago and that'll take another 12 weeks, as the reduction this time is very slow. Onc also warned that she may be in for endocrine system problems so we'll be on the lookout for any issues there and, frankly, 2 1/2 years of steroids have taken a huge toll (you just look at her and she bruises - every time she has a different nurse in the chemo suite and they see her arms they question her as to whether or not she's being abused.) The onc says it'll take some time but her skin will thicken up again and return to normal.

She's had several side effects involving inflamation (uveitis, suspected pneumonitis and myocarditis) but , other than the uveitis, her onc could not tie it to nivo - so many instances that we jokingly refer to them now, collectively, as "nivo-itis" but some of these have been very scary so this is why I'm glad treatment is finishing.

She also has vitiligo head to toe - I had wondered about this but, when her hair and eyelashes grew back after WBR, we had assumed that the radiation had caused it to turn white but onc confirmed today that it was the ipi (had two combo infusions before WBR and then nivo only thereafter.)

Also, I mentioned before that my sister had asked for and was prescribed Ritalin - this was not long after WBR and it was specifically given to combat the weakness and fatigue it leaves. She stayed on it for a year, took herself off and then, wham!! - experienced nivo fatigue for the first time, which has stayed with her, so another great reason treatment's ending. For those experiencing such fatigue though, it may be worth asking for Ritalin.

A quick word about her nivo dosage: under the trial she was in, the nivo infusion was the 1 mg. per kg. with the combo but her nivo only has not been the 240 mg. - it has been a steady 3 mg. per kg. Prior to weight gain with steroids, she would've been under the 240 but that didn't last long and for (about) the last 16 or 17 mos., her dosage has exceeded 240 mg.

And, maybe of importance to anyone here in Canada, for the last year of treatment, we were kind of in the dark as to who or what program was paying for treatment (she started under clinical trial but it was only a year long) - we thought it was some sort of "arm" of BMS paying for her treatment (because they had interviewed her when the trial concluded) but, lo and behold, it was our good old OHIP system here in Ontario that paid. 

As for a plan in the event of recurrence, onc says she'd probably look for another trial but that taf/mek and immuno would all be available to her (not the case if she had failed on them though but she never did - responded to everything).

One thing I want to ask about here is: onc wants her to concentrate on skin checks because she stated that her (my sister's) odds of developing a new primary were still much higher than the general population. I thought it was only about a 10% chance >> is that not right (I'm sure I got that info here)???? Naturally, she'll be seeing her derm regularly anyway but I want her to be on the lookout for intransits, given the number of them she had previously.

Last thing, I've stated it here before but it's worth repeating - immunotherapy has done the total job for my sister, there was no surgery after CLND (if we added all organ, bone mets and intransits, the tumour burden would've actually been well over 100 - and that does not include the hundreds of micro brain mets or the larger ones, 3 of which were bleeders). She's had a pretty rough ride - WBR is no picnic and mel has left her with permanent damage - BUT she has her life back and I still have my sister. :)

Take care everyone and most importantly, don't lose hope!!!! Cheers!


marta010 - (6/13/2018 - 7:54am)

Barb - what a tough battle for your sister.  So happy for both of you that she persevered through so many issues and has triumphed!  This story is what we all need to hear. Hope you all have many, many happy years ahead!


Thank you Ann!! Her outcome is my wish for everyone else - that and that one day soon the drugmakers will have effective treatment for all forms of mel!!! Our best to you :)


jennunicorn - (6/13/2018 - 11:38am)

The journey has been quite a ride for your sister. I am excited for her to live her life off treatment and continue to be NED! And hugs to you, Barb, for being such an awesome sister!

Jenn - stage IV NED - Completed Ipi/Nivo (Yervoy/Opdivo) + surgery

Ahh, thanks Jenn, you're always so sweet!! I'm not that awesome though - more like selfish. I just wasn't ever prepared to lose her - she's all I have left in terms of family!!! We are excited too that you are doing the same (living your life!!!) and I hope you are busy planning a wedding!!!! our best thoughts and wishes will always be with you!!!

Barb xo

KAF - (6/13/2018 - 9:02pm)

Great news!!!  You basically told my story - vitiligo, steroids, 2 years of treatment, etc...  I have one more set of scans next month and if those are clean like the ones before then my doc is taking me off treatment.  Can you keep me/us updated on the weaning of her steroids?  I’m nervous to do it after being on them almost 2 years and I was told that very few ever get off of them.  I hope you’re sister is successful with that and I look forward to the updates 

Hello KAF - That is OUTSTANDING!!!! I'm so happy for you - for your NED status and looking at ending treatment. I can only imagine it'll be kind of liberating. And yeah, the steroids are a big issue - she tried a taper last fall and was unsuccessful - nivo fatigue worsened and she developed nivo rash right away - onc said it wasn't worth it and put her back up. But this is a "must" now and hopefully her system can be "coaxed back" to normal function on its own. I'll hold the same thoughts for you and yes, please post an update for yourself - I'll be watching for it :) and I'll update too.  Best wishes!!


cjm22 - (6/14/2018 - 11:26am)

YAY!!! You give us so much hope still. I'm so happy for you and your sister.

Barb, may I ask what hospital you and your sister are at in Ontario? My husband and I are in BC and he's still on Taf/Mek (just talked with oncologist yesterday - looks like there is still lots of cancer but it is shrinking - although his increasing backpain has me worried that the targeted treatment's days are numbered). Oncologist here is being a little shady about what the next steps could be if Taf/Mek stop working. I'm pretty sure immunotherapy would not be covered anymore in this province. But we have family in Ontario and could move there.

Unfortunately he did do one round of immunotherapy before moving onto Taf/Mek, but we hesitate to say he "failed" it... Within 9 days after taking the immunotherapy combo, they decided his situation was way too dangerous and he needed something faster-acting. It seems to me he could still have a shot at immunotherapy working, now that they've got his symptoms under control... He is able to breathe and is living basically normally now, except for the back pain which started 2 weeks ago -- HUGE change from 2 months ago where we had palliative nurses in our houme.

He's on low-dose opioids again for the back pain and we're going to talk to the radiation oncologist to see if there's anything they can do. CT scan didn't show any sign of fracture or compression, but also no sign of tumour growth there, so the oncologist isn't sure where the pain is from but it's probably cancer-related, not mechanical.

cjm22 - (6/14/2018 - 11:28am)

Sorry, I should say "no sign of tumour PROGRESSION" there -- he definitely had spine metastases. But they look the same size or smaller. No clear reason why they'd be causing so much more pain now. Blood work is all normal.

Hi CJM - I've been following your posts so it's good to hear that your husband is doing that much better!!! I personally hold taf/mek in the realm of "magical" treatment because it is SO powerful when it works and it sounds like it's doing that for him. Yayy!! :)

In your last post, you mentioned then that his onc was (maybe ??) not a mel specialist and I posted to your thread with the list (scant though it is) of mel docs and their facilities in BC and AB ... wondering if you saw it as it may be a much quicker way of getting to someone new, if it's warranted ... just a thought.

My sister Leisa is being treated at Juravinski Cancer Centre in Hamilton ( ) and I can't say enough good things about the facility, doctors, techs and other staff. That doesn't mean we haven't questioned some things that went on though .. but much of that has to do with what OHIP will and won't allow (eg., no gamma knife if more than 4 brain mets, no cyber knife if more than 10).

It's those types of concerns that came to my mind too when I first read that they had taken your husband off immuno to go on taf/mek ... it makes you wonder if they shouldn't have started with taf/mek first??? And, I really doubt that they can conclude immuno "failed" after only 9 days!! So, I agree with you totally that you have reason to be concerned that provincial health authorities might say no more immuno because he "failed" when in fact that (IMO) isn't a reasonable conclusion.

Re. your husband's back pain/spinal mets - Leisa had radiation on hers in Jan. 2016, specifically to kill the pain (her T12 was fractured, later collapsed totally, another fractured later and is partially collapsed). The radiation was effective for the pain caused by cancer but the collapses and resulting compression created other pain (further down the road) that she has learned to live with. It is constant and remains her #1 "quality of life" issue but maybe radiation is an option to consider for your husband. Through all of that she had morphine, both the longer acting and the one for "breakthrough" pain. After about 6 weeks, she didn't feel she needed anything for pain then and stopped taking it. 

I hope this is of help to you CJM - please don't hesitate to ask anything you're wondering about, at any time and for sure, keep us posted if you can. Take care!! Best wishes and thoughts are with you!!


cjm22 - (6/14/2018 - 10:42pm)

Thank you for the advice!! Honestly we've hesitated to contact a different melanoma oncologist ... My husband likes the one we have and he doesn't want to stir the pot too much. We found out today he's got a radiation treatment scheduled for next Tuesday so hopefully that will help the pain, although today he mentioned that he also has intermittent pain in his hip (another metastasis site) so we're not sure what's going on -- maybe he needs radiation in both places.

You're so kind and your sister's story is so great! I hope she feels better every day! I hope someday we go back to Ontario to visit our family when my husband is feeling better and we'll pay you a visit -- I have some cousins in Hamilton :)

I totally get "don't want to stir the pot" - we felt the same way. So were you able to confirm that his onc is a mel specialist ? ... because that makes a world of difference ... I hope he is!! Likewise, I hope the radiation treatment is immediately effective for his pain!!!!  Leisa did have alot of pain in other bone mets that weren't radiated, even as we literally watched them shrink while she was on taf/mek - hers were in places we could see, like ribs, top of femur, her right shoulder area. I am a big believer in "visualization" so I often thought of the pain she was feeling as the result of the "beast" being slain - I visualized a war raging inside her and "our side" (taf/mek) being the heroes, killing the bad guys  :) I hope there's a similar battle going on right now for your husband - I'll hold that "picture" in mind for him!!!! Take care!


Bubbles - (6/14/2018 - 3:36pm)

That is so great to hear, Barb.  You and your poor sis have been to hell and back again!  Cheers, to you both!!!  She is an amazing trooper and super lucky to have you in her corner!  Blessings!! celeste

Thank you Celeste!! for blessings, all info you provided to me/us and for everything you do for all mel warriors, here and everywhere else!! You are truly a 'beacon' shedding light on a very dark demon and may you shine brightly always!!! :) Sending our best along with big hugs from both of us!!