Melanoma Research Foundation | Rosiepup | Activity https://forum.melanoma.org/user/rosiepup/activity/ Activity feed for Rosiepup. Mon, 13 Apr 2026 14:42:53 -0400 https://buddypress.org/?v= en-US 30 hourly 2 caa18fdaa80e6e6c4dc55f550351bd6c Rosiepup started the topic Terrified in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/terrified-2/ Sat, 12 Jun 2021 05:54:20 -0400 This has been a hideously scary week for me and my family. I became severely unwell last week with diabetic ketoasidosis and an emergency admission to to the hospital HDU. My Pancreas is basically shot to pieces and whether this is permanent or not, time will tell! Its thought to be a side effect of previous ipilimumab, Temozolomide, steroids, or…Read more

]]> 8d8f6133b70731e5473697ccd3f2abf9 Rosiepup replied to the topic Lag-3 data starting to come in and combination of Lag-3+Nivo shows great PFS in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lag-3-data-starting-to-come-in-and-combination-of-lag-3nivo-shows-great-pfs/#post-274770 Mon, 24 May 2021 16:40:27 -0400 Ed thanks so much for that. Spookily I was given Dr Glitza’s name by Dr Tawbi and emailed her yesterday! I’m waiting to hear back from her. The problem is I’m in Scotland and don’t have health insurance. But I would do crowd funding etc if I have to!

Im just soo worried!🥺 I’ve been fighting this beast for 7 years and I don’t want to give up but…Read more

]]> fe84dfc6d80a32d79c4b32befe9a4bc6 Rosiepup replied to the topic Lag-3 data starting to come in and combination of Lag-3+Nivo shows great PFS in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lag-3-data-starting-to-come-in-and-combination-of-lag-3nivo-shows-great-pfs/#post-274767 Mon, 24 May 2021 14:54:28 -0400 I’m still looking for the Holy Grail for brain mets and possible leptomenigeal involvement. Could this help do you think? I’m on Temozolomide at the moment and if it’s not working, which I’m not holding out much hope for! I will be getting enco/bini? If they buy me some time, any thoughts re this or any other treatments? Someone told me about p…Read more

]]> abbc75487d7bf9e70cbbe6f4ebf96703 Rosiepup replied to the topic Are we out of options? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/are-we-out-of-options/#post-274710 Sat, 15 May 2021 13:51:33 -0400 Oh Jenny I’m soo sorry to hear that. It does seem so quick! Was he not able to get any further treatments?

Sending you lots of love and hugs 🥺💞💞

fiona xxx

]]> c096a1b8f10bdb257ff5798279c21944 Rosiepup replied to the topic Are we out of options? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/are-we-out-of-options/#post-274638 Sun, 02 May 2021 08:21:52 -0400 Hi Jenny, I have just posted for help and advice myself on the forum. But I also saw your posts and am gobsmacked by how similar your husbands current situation is to mine!

I was wondering how things are going for you both? Are you in the UK? I’m in Scotland. And if we could bounce information off each other?

Thanks, Fiona

]]> c52930093e83449a7dd8c413712ecef4 Rosiepup started the topic Brain tumours increased in size and numbers!🥺 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-tumours-increased-in-size-and-numbers%f0%9f%a5%ba/ Sun, 02 May 2021 06:58:03 -0400 <p class=”p1″>Hi </p>
<p class=”p1″>I’m sorry if it’s a repeat of what advice has been given before, because my latest update is so similar now to Jenny’s husbands story from a recent post!</p>
<p class=”p1″>Bad news re latest scans, received on Friday . The recent change to immunotherapy treatment from nivo mono therapy to 4 doses of ipili…Read more

]]> 9e6cfe6a411f484cf70dfd89f2610752 Rosiepup replied to the topic Update about brain mets treatments in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-about-brain-mets-treatments/#post-274383 Wed, 17 Mar 2021 11:13:15 -0400 Sorry I know a good few of you have already given me your thoughts and loads of information in previous messages!
I really just need to get my head, pardon the pun,😬 round everything!
Sorry about being repetitive!
All advice and information has been greatly appreciated!
I just find it hard to fight the system, especially here in Scotland!

]]> f3d54287f3e88c3a936014f642ff03f6 Rosiepup started the topic Update about brain mets treatments in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-about-brain-mets-treatments/ Mon, 15 Mar 2021 19:55:52 -0400 Hi all, sorry I’ve posted this also at the end of my earlier post but wasn’t sure which was easier to see?
So sorry not been in touch for a while but I chickened out of getting a second opinion!
After my last update on this thread I met with the neuro oncologist an appointment arranged by my oncologist.
He reiterated that I was definitely not for…Read more

]]> 80f948997807ed10db9aadc1b226318c Rosiepup replied to the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/#post-274371 Mon, 15 Mar 2021 16:47:32 -0400 Hi all, sorry I’ve not been in touch for a while but I chickened out of getting a second opinion!
After my last update on this thread I met with the neuro oncologist an appointment arranged by my oncologist.

He reiterated that I was definitely not for further SRS at this time. He had discussed my case with the neuro oncology team and apparently t…Read more

]]> dbc986e4bbef35119d0e74a295387f7c Rosiepup replied to the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/#post-274135 Sat, 06 Feb 2021 13:42:22 -0500 Thank you so much for this!❤️I’ll have a look at them today.
Yes, it’s an added pressure having to be our own advocates! But thanks to the information and support I’ve had from yourself and many others in this group I’m hanging in there! You’re an amazing team!❤️💞😘

]]> 77606a3d2b9af2468b73977864576e28 Rosiepup replied to the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/#post-274133 Sat, 06 Feb 2021 10:47:14 -0500 Hi it’s the pest again! Does anyone know of anyone or had personal experience of SRS after a previously treated brain lesion has potentially failed? Either treatments to other lesions or to the same lesion?

I’m just trying to get as much evidence as I can, even if it’s anecdotal?

Thanks 🙏

]]> e74eea0e5da8ad8cd07518ddcfc358b9 Rosiepup replied to the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/#post-274132 Sat, 06 Feb 2021 00:54:25 -0500 Thanks so much for this. I’m convinced from what my oncologist has passed back, that the neuro oncologist doesn’t want to zap the newer brain mets because they think that the original lesion zapped 2+years ago is now potentially spreading or as she said ‘seeding’ elsewhere so not worth doing anything with the other lesions! I still don’t get why c…Read more

]]> df46d7b58d47d9acb2061d7366577fcf Rosiepup replied to the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/#post-274130 Fri, 05 Feb 2021 21:54:24 -0500 Mark and Melwave, and everyone else who’s been a great support. Particularly Celeste and Ed.

Phone call from my oncologist for the first ipi treatment on Monday.

And a clinic appointment in a week with the neuro oncologist. Presumably for him to tell me exactly why he’s not doing stereotactic radiotherapy!🙄😒

So any studies/reports/anecdotal evi…Read more

]]> 64af7563334f1388331fb7d023414f57 Rosiepup replied to the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/#post-274113 Tue, 02 Feb 2021 17:00:42 -0500 https://ascopubs.org/doi/full/10.1200/EDBK_243071

https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.10005

My oncologist also feels that for Braf positive and my history the results of ipi mono are a better risk? Not sure if these are similar? I’m not great with my terminology translations! All thoughts on this appreciated?!❤️

]]> b8ab565b529ab4d48d8e4ff68b8d861c Rosiepup replied to the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/#post-274112 Tue, 02 Feb 2021 16:41:06 -0500 Thanks so much Melwave, see my message above to you and Mark. I know a second opinion would be the ideal but I think time, risk and Covid restrictions make it very difficult!

Im still struggling with it though!🥺❤️

]]> 93e48dea42b2fcaa5e5e4fddacf99913 Rosiepup replied to the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/#post-274111 Tue, 02 Feb 2021 16:33:17 -0500 Thanks for your help Mark and Melwave ❤️
I have been trying to find more info but it’s not easy. Especially with my history! I feel resigned to go with the planned ipi as it’s due to start on Monday and the time it would take for a second opinion and then to actually get authorisation on the NHS would take too long. Plus Covid restrictions! I kno…Read more

]]> 52e34d0845acdad9d89b8a3d4bdc1d0c Rosiepup started the topic My profile info with more details+more questions! Sorry! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-profile-info-with-more-detailsmore-questions-sorry/ Sun, 31 Jan 2021 19:03:03 -0500 I hope my blurb isn’t too long but I feel I’ve possibly missed some of the most recent updated information!  The first part I have shared before I think. But it’s the last 2 years I’ve added to?

Here goes, and thank you so much again for all your  help!

Pre medication history
March 2014-mole on right ankle removed and Melanoma confirmed…Read more

]]> 48a87cebaf6a5d296319949231c215d3 Rosiepup replied to the topic Meeting today to discuss planned treatments for brain mets in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/meeting-today-to-discuss-planned-treatments-for-brain-mets/#post-274095 Sun, 31 Jan 2021 18:49:22 -0500 Thanks for this Mark👍
my oncologist is a very good melanoma specialist and I do trust her! I’m  just struggling, as I thought I’d at least get the SRS? But that’s the neuro team’s decision?

I’m not sure where the patient profile is? The only thing I could find has very basic information space? Might be me though!🙄😬

I was going to start anot…Read more

]]> 31b1b5cab5b70e1665e88b3ffb4b0cae Rosiepup replied to the topic Meeting today to discuss planned treatments for brain mets in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/meeting-today-to-discuss-planned-treatments-for-brain-mets/#post-274090 Sun, 31 Jan 2021 01:06:39 -0500 Sorry I know I’m probably being a pain but I’m struggling so much more this time after all these years!

I thought I was dead in 2015! Mets spleen and liver plus lymph nodes! Being a nurse I was nailing the coffin! But it was fantastic results from Braf/mek, then my brain mets. Been up and down mentally but always positive. Until now!
Brain. The…Read more

]]> 196bbd2a9438adaba9fa2b97057efa7d Rosiepup started the topic Meeting today to discuss planned treatments for brain mets in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/meeting-today-to-discuss-planned-treatments-for-brain-mets/ Sat, 30 Jan 2021 01:11:21 -0500 I sent an email to my oncologist on Tuesday and got a Call to come to clinic to discuss my thoughts today.
Good news from today  – CT body scan results from Tuesday are in and good 🙌🎉💞
The Not so good news – my consultant is not going to change my treatment plan😒. For ipi mono and no SRS at the moment.  But I need to trust it’s good enough! She…Read more

]]> 32dcef4001b199963a46245c3c0cc768 Rosiepup replied to the topic New Video by Dr. Weber reviewing treatment options for metastatic melanoma in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/new-video-by-dr-weber-reviewing-treatment-options-for-metastatic-melanoma/#post-274045 Sun, 24 Jan 2021 19:55:20 -0500 Thanks for sharing Mark. I will have a look and see if I can see what Corrales with what’s on offer!🤞🙏 Sorry, I sound bitter and don’t mean to be!
I wish I could share photos here for cheer up purposes. A fantastic friend brought round two, yes two! Delicious tray bakes! ❤️

]]> 092cdcacc494eecb6405be068e91fe98 Rosiepup replied to the topic Update from my clinic appointment re possible brain mets treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-from-my-clinic-appointment-re-possible-brain-mets-treatment/#post-274034 Sat, 23 Jan 2021 23:13:09 -0500 Thanks for that Ed, looking at this I can see where my oncologist is coming from, I think! She’s not totally against ipi/nivo combi but thinks I might tolerate ipi alone better, crystal balls at the ready! Should I just pick the long/short straw!🥺. Very good interview though, which makes you think!

I don’t suppose you have any straight for…Read more

]]> f6d5d053b74950ddc13281cdd69c4a4a Rosiepup replied to the topic Update from my clinic appointment re possible brain mets treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-from-my-clinic-appointment-re-possible-brain-mets-treatment/#post-274030 Sat, 23 Jan 2021 22:47:58 -0500 Thanks Melwave it’s not something I would want to do but I know you’re right, this is my life! Do you know anyone you could recommend? Thanks ❤️

]]> 5270ff12209e0185e598a08cc22e0417 Rosiepup started the topic Sorry I am struggling!! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/sorry-i-am-struggling/ Sat, 23 Jan 2021 22:28:36 -0500 Sorry folks, I know I’ve been a pain since last week, but I’m just struggling so much! Despite having been going through this hell since 2014, and all the trauma since then, this is the first time I can’t get out of the depths. 🥺🥺 My usual attitude is dipping terribly! What to do/where to go to get the right treatments for me! I know I’m probably…Read more

]]> 41ac9e965ad559168ab24ce241cfa8a1 Rosiepup replied to the topic Update from my clinic appointment re possible brain mets treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-from-my-clinic-appointment-re-possible-brain-mets-treatment/#post-274024 Sat, 23 Jan 2021 09:49:05 -0500 Thanks Melwave, yes I’m in Scotland so in the present Covid climate I wouldn’t be able to go elsewhere. Plus I’ve been very happy with the care my oncologist has given me until now. She would, I think 🤞, be amenable to any information I can provide as I think 🤞🤞she is very progressive. She does worry that I wouldn’t tolerate the ipi/nivo again.…Read more

]]> 9a19727fd29d91b657460fd870771f6f Rosiepup replied to the topic Brain metastases retrospective study at Ottawa Hospital spanning 2000- 2017 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-metastases-retrospective-study-at-ottawa-hospital-spanning-2000-2017/#post-274022 Sat, 23 Jan 2021 01:13:29 -0500 Thanks Mark, Celeste, Ed and Mel, my brain is like fudge at the moment and it’s not the lesions that are responsible! Unfortunately I also have Parkinsons Disease just to sicken my happiness! I just don’t know what to do about this situation! I really respect my oncologist but I’m not sure about the neurological team! With Covid restrictions where…Read more

]]> 242dc26c9a98a27035d7331075aefb4d Rosiepup replied to the topic Brain metastases retrospective study at Ottawa Hospital spanning 2000- 2017 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-metastases-retrospective-study-at-ottawa-hospital-spanning-2000-2017/#post-274016 Fri, 22 Jan 2021 21:40:10 -0500 We’re better than this Ed! All of us!🙌👍🤔😬. I’ve lived with Parkinsons since I was 43 and my daughter was 5! And melanoma for the last 6+ years!
Struggling big time but never giving up!
❤️
But while I’m here,😬, thoughts re this?

Message re the decision about NO further SRS for me,

Hi Fiona,
As there are two more lesions they can’t offer it becau…Read more

]]> cec0f67d685bc167140e4e7003ccc604 Rosiepup replied to the topic Update from my clinic appointment re possible brain mets treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-from-my-clinic-appointment-re-possible-brain-mets-treatment/#post-273999 Thu, 21 Jan 2021 18:25:39 -0500 Thanks Ed👍 I’ll give it a go 🤞

]]> c01a49813af7edc34bea5567a4a39fd3 Rosiepup replied to the topic Update from my clinic appointment re possible brain mets treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-from-my-clinic-appointment-re-possible-brain-mets-treatment/#post-273996 Thu, 21 Jan 2021 18:19:35 -0500 Thanks Ed, that’s so helpful!  Alongside Celeste’s previous info, I’m now getting a tad more worried! 🥺  The link to Practice update.com looks very interesting but I have to join to view? Happy to do that but just checking?

Sorry for all the questions! I’m just so worried! Feeling a bit, last chance saloon 🥺

]]> 07e0b6ddb89ce1ef6b6fc5f551b2521b Rosiepup replied to the topic Update from my clinic appointment re possible brain mets treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-from-my-clinic-appointment-re-possible-brain-mets-treatment/#post-273992 Thu, 21 Jan 2021 17:27:54 -0500 Thanks Ed, I’m worried about why the neuro oncology team have said no to stereotactic radiotherapy! I know they now seem to think the lesion zapped 2 years ago is now potentially tumour but I don’t understand why not the other 2 small ones? They caught me on the hop today with that one! And the two new focal points that might be another two ver…Read more

]]> ff1cf1d70d008365a3e971d4d60336fd Rosiepup started the topic Update from my clinic appointment re possible brain mets treatment in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/update-from-my-clinic-appointment-re-possible-brain-mets-treatment/ Thu, 21 Jan 2021 14:54:54 -0500 <p class=”p1″>Hi just wanted to give an update from my clinic appointment today with my oncologist. I’m so worried now, if I wasn’t already!.  As some of you know, I was going to find out what the plan was for treatment of recently discovered brain mets (see my previous post). I thought I’d be offered SRS for the two more recent lesions and wasn’t…Read more

]]> 8bb3e914dfcf9d580b46443281e6006d Rosiepup replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273980 Wed, 20 Jan 2021 22:06:09 -0500  

Thanks Ed, et al! I’m sorry if you’ve seen this but I’m not sure if it’s shared properly! And I’m getting pre-clinic-uptight!

I do worry about the SRS. I meant to say in my post earlier. Especially as the original area that was zapped is still getting bigger, 2 and a quarter years after the STS. Is that unusual? I always thought it was necro…Read more

]]> a6bb0dec9d443f6e934bb25d4af81c74 Rosiepup replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273979 Wed, 20 Jan 2021 20:35:02 -0500 Sorry Ed my reply to you has gone half way up the list of replies! If you can let me know if you can see it? Thanks

]]> 2cb79b1f5fd9cf9081c7c995e00cde23 Rosiepup replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273978 Wed, 20 Jan 2021 20:30:26 -0500 Thanks Ed, I do worry about the SRS. I meant to say earlier. Especially as the original area that was zapped is still getting bigger, 2 and a quarter years after the STS. Is that unusual? I always thought it was necrosis but because it’s continued to get bigger, roughly 18x16x19mm. Initial lesion 5mm! I now worry it’s something to worry about!  Ju…Read more

]]> b8a1aaa6eb410c2b6f1cd5976f2bf52f Rosiepup replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273973 Wed, 20 Jan 2021 19:11:50 -0500 Ed sorry but were you possibly adding anything re my clinic appointment tomorrow morning (about 5am for you!😬)  Celeste has been fantastic!👍❤️ But I’m really getting anxious, despite having been here many times before!😒🤞🙏

]]> acd316140cad0f6c21c6d57e393dce31 Rosiepup replied to the topic MRF Contact and Information in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mrf-contact-and-information/#post-273968 Wed, 20 Jan 2021 17:22:02 -0500 Hi Ed, I don’t know if that’s because I started the first thread? I’m in Scotland and it’s 17.19 here! Sorry for my bad timing!😬

]]> fab57840767c4edbcd4b3b4c6109f97c Rosiepup replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273964 Wed, 20 Jan 2021 17:05:56 -0500 Hi Ed, yes I can see your test message 👍 I’ve found that if you go down to the very last reply there’s a reply box at the very bottom. And I can see what I’m typing? And hopefully if this posts that works? The only thing is you have to prove your not a robot and then press the submit button which is after the tag list 🤞

]]> 0697eddecaba3240083da3f670555d72 Rosiepup replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273958 Wed, 20 Jan 2021 15:44:29 -0500 Hi thanks so much for that Celeste, it’s attached now 👍❤️

]]> 35e99964ec3a8e85e11671953886ce88 Rosiepup replied to the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/#post-273954 Wed, 20 Jan 2021 12:23:36 -0500 Hi Celeste, sorry but no full response is showing! But your test is. Not sure if that’s good or bad!

Thanks ❤️

]]> bb31f9eedae242e22cf2d93982cdaa6b Rosiepup started the topic Trying to add to my previous post and looking for advice? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/trying-to-add-to-my-previous-post-and-looking-for-advice/ Wed, 20 Jan 2021 10:29:02 -0500 Hi all, sorry I tried to add this to my previous post about brain mets but I couldn’t see what I was typing! I’ve just had a call and I’ve to attend the clinic tomorrow morning to discuss future plans.

I have got some questions myself but I wondered if any of you could think of anything you’d be asking? Any help would be greatly appreci…Read more

]]> 07a4bcf3db6a1c0d5c86a76ef201de93 Rosiepup replied to the topic Lymph node enlargement after 9 treatments of Opdivo in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lymph-node-enlargement-after-9-treatments-of-opdivo/#post-273949 Tue, 19 Jan 2021 23:06:06 -0500 <p style=”text-align: left;”>Hi Soonerjen14, I have a different yet similar starting point to you but mine was 2014/15! Mole removed then lymph nodes enlarged a year later! PET scan showed spread to spleen and possibly liver😳🥺. So long story short, only the obvious nodes were removed so I could start treatment quickly!👍  Unfortunately in the UK…Read more

]]> 3f6ea7bbc4debdadfe1ffc40cf5cf046 Rosiepup replied to the topic The right questions in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/the-right-questions/#post-273930 Sun, 17 Jan 2021 23:22:56 -0500 Oh I soo wish I was at the point of potentially NED! 🤞🙏 Great news for you! For me, the main question I would have is, will I still have close follow up including scans, blood tests, etc, for at least a year? Hopefully longer?  And any possible symptoms of relapse, will I be automatically able to contact and get a review?

Although this is…Read more

]]> af11cef4ae4d23c42f7ff6cfba047589 Rosiepup replied to the topic Brain mets slow growing? And sorry, but a lengthy update on how I got to now! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-slow-growing-and-sorry-but-a-lengthy-update-on-how-i-got-to-now/#post-273929 Sun, 17 Jan 2021 22:40:58 -0500 Thanks so much for that 👍

]]> d16b210f85dfa6ebc520ee7fd190abb8 Rosiepup replied to the topic Brain mets slow growing? And sorry, but a lengthy update on how I got to now! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-slow-growing-and-sorry-but-a-lengthy-update-on-how-i-got-to-now/#post-273926 Sun, 17 Jan 2021 21:50:02 -0500 Sorry Melwave for the spelling at the end there!🙄❣️ Also can you remember any articles? I did get a couple from this site but if there’s any others that would be greatly appreciated. Thanks

]]> 8119c05bf73faa30370755e47900a288 Rosiepup replied to the topic Brain mets slow growing? And sorry, but a lengthy update on how I got to now! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-slow-growing-and-sorry-but-a-lengthy-update-on-how-i-got-to-now/#post-273925 Sun, 17 Jan 2021 21:39:25 -0500 Thanks so much for that Melwave👍 I have been thinking that too but my consultant isn’t keen. She would rather go potentially with stereotactic x2. But it’s down to the neuro oncologist.
Also I don’t know if anyone else has had this but I literally stopped the Debraf/mek on the Sunday and then had  the ipi/nivo infusion on the Monday…Read more

]]> 0d7170c196649d8776a92c00621c564f Rosiepup started the topic My previous question about brain mets? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/my-previous-question-about-brain-mets/ Sun, 17 Jan 2021 12:16:44 -0500 Hi sorry to be a pest but I just wanted to check that I did my previous post from Friday correctly? It looks a bit glitchy and I’d hoped for some ideas? Thanks and sorry if I am being a pain!

]]> 5407b6f6084bcd76e937d1de7e13799e Rosiepup replied to the topic Brain mets slow growing? And sorry, but a lengthy update on how I got to now! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-slow-growing-and-sorry-but-a-lengthy-update-on-how-i-got-to-now/#post-273914 Sat, 16 Jan 2021 09:16:43 -0500 Sorry I also meant to say I’m in Scotland and some treatments may not be available here.  But any suggestions would be greatly appreciated! I will hopefully be hearing what the plan is next week, so I would really like to be as armed with information as I can be! Thanks 🙏👍

]]> 9570e514223ddde5eeaa22b5335ec056 Rosiepup started the topic Brain mets slow growing? And sorry, but a lengthy update on how I got to now! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-mets-slow-growing-and-sorry-but-a-lengthy-update-on-how-i-got-to-now/ Fri, 15 Jan 2021 22:47:02 -0500 <p class=”p1″>Sorry I’ve probably shared a lot of this before, and sorry too that I’ve not been on for a while! But any thoughts/advice/links, would be greatly appreciated! Thanks 👍</p>
<p class=”p1″>March 2014-mole on right ankle removed and Melanoma confirmed. Wide excision carried out and failed skin graft, unfortunately. But at this point the…Read more

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