sister of patient

Not 5 years yet but in the 5th – so happy to report that my sister, Leisa, remains NED!!!

The site’s changed so much and most of the profile info seems wiped out (maybe it’s there and I can’t find it) but I’ll just add that this is NED after a huge tumour load in bones and organs and hundreds of micro-mets in her brain. Immunotherapy (mostly nivo) and WBR did it all!!!

Please, never lose hope ..!!.. though I know that’s much easier said than done!!

Big hugs to all.

Barb

Oh Donna – I’m so sorry to hear you’re feeling so low, although it’s totally understandable!!!

Just to address a couple of things you ask or mention: I had a cousin who lost his spleen many years ago, though not through disease (accident) and he has remained very healthy!!

Secondly, when my sister was in the throes of mel, none of the anti-depressants she was prescribed worked for her either – there were times I worried more about her mental state than her physical. Her treatment began with Taf/Mek but she only managed two weeks before the side effects were overwhelming (fever, headaches, vomiting) and then a Gr 3 skin eruption (spread to 80% of her body) ended the treatment, period. But, only those few weeks of Taf/Mek did great things for shrinkage of existing mets even though she also experienced progression. At this point her onc switched her treatment to immunotherapy, ipi/nivo combo … she only had 2 rounds of that before more ARs ended it but went on to become NED after a year of nivo only. I know you’ve had nivo but weren’t on it for long before they switched you to Taf/Mek …. am wondering if your doctors have addressed the immunotherapy combo with you as a treatment plan? If not, perhaps you could ask them if it’s a possibility (I did read your bio … no preclusions were mentioned).

You also use the words “continual failures” above and mention in your bio that you were told by doctors that they “got it all” … so that can certainly give one a sense of failure too. But in reality, what they “got” was everything they could see and find. That’s not a “failure” – mel is too sneaky to always reveal itself. Even the acronym NED reminds us that there is no “evidence” of disease … from scan to scan. You have not failed!!! so please try to stop fighting that mental war and put it in its place!!!

In the “blackest” days with my sister, I’d read her NED stories – it helped both of us tremendously and you can find alot of them here on this site!! But also, there’s nothing like the word “shrinkage” to lift the mood and you’ve had some, so do take some relief from that – you are responding in some fashion. Some times it’s slow to see a response … and for some it’s much quicker. No matter, it’s definitely a roller coaster ride for all who find themselves there (including the caregivers).

You can do this Donna!!! Post as much as you need to – we are all here pulling for you!!!! Wishing you the best!!!

Barb

Yes!!! Way to kick butt Jennifer!!! You are on your way – soooo pleased for you!!!!

Best, always!!

Barb

Hi SKS2019 – Just a reminder that private messages through this system can get caught by spam filters as can any direct personal message, so always a good idea to check your spam-mail.

Best,

Barb

So glad to see your post and even better to learn you’re doing great 3 years later!! Happy Anniversary and wishing you many more, always!!

Barb

That is fabulous news – so pleased for you Edwin!! Thank you for sharing it and wishing you the best, always!!!

Barb

Hi Jennifer – So happy for you that you can look at your lumps and bumps now and see them shrinking!!!! And yes – what’s going on on the outside IS going on on the inside too!! 🙂

As for the rashes, etc. – skin products made with colloidal oatmeal can definitely help and they come in a variety, i.e., body lotions and moisturizers, shampoos and even bath balms. If your rash really takes off, your doc may want you on a low-dose steroid – but that’s no big deal and really shouldn’t interfere with the efficacy of the immuno.

Again, so pleased to learn it’s all working for you, that you’re feeling OK and managing with your new job!! Way to go!! Take care 🙂

Barb

Hi Jennifer – I’m so sorry that you and your family are going through all that you’re enduring right now!! To answer your specific question about the bruising – Yes! My sister, Leisa, had many “lumps and bumps” and quite a few of them bruised as they made themselves “known” – they were all colours >> blue, green, purple. I know it’s way easier said than done but try not to dwell on them if you can, nor count them!! Once you’re receiving treatment, then have a look and you’ll, hopefully, be watching them “melt” away!!! Wishing you the very best!!!

Barb

Hi Cindy Lou – I’m so sorry to learn of all you are dealing with now and I wish you the best possible successes with your treatment!! I suspect there are many on this board who have dealt with mets to the pancreas – I actually don’t think it is that uncommon – and, as we know, mel is not discerning as to where it travels. My sister had so many mets from her pancreas and spleen that the two were nearly “fused” together with them. But they’re totally gone now and both organs clear because treatments like taf/mek aren’t discerning either – they’ll hit everywhere they need to!! You take care – we’re all pulling for you!!!!

Barb

Ah Caleigh,

There just aren’t any words … I am so, so sorry to learn of Jordan’s passing. What a lovely man!!! May peace find its way to your heart quickly!!!!

Barb

Hi Maggie – I’m always so glad to read your posts no matter how often (or not) they appear 🙂 I am never “far” from the board either and am a “lurker” now more often than not. I want to wish you the best for tomorrow though – will be thinking of how those magic gamma rads will be kicking butt for you!!! I did see your post too on the recent questions I asked – thanks so much for talking about craniotomies – not an easy subject!!! You take care!! Best, always,

Barb