Melanoma Research Foundation | hxcadam | Activity https://forum.melanoma.org/user/hxcadam/activity/ Activity feed for hxcadam. Tue, 21 Apr 2026 23:43:43 -0400 https://buddypress.org/?v= en-US 30 hourly 2 73686d9accdc58adf11061a208e6a67c hxcadam replied to the topic Brain met stats are so horrific (>3) in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brain-met-stats-are-so-horrific-3/#post-275937 Fri, 05 Nov 2021 14:20:25 -0400 Going through similar.  Had 2 small brain mets treated with SRS in Feb 2020 – started Nivo and when my body progressed went on Taf/Mek.  Did taf/mek until July 2021 when the tumor on my T2 tried to paralyze me.  Had surgery and found a small brain met during MRI at that time.  Had SRS for that and started on the combo ipi/nivo.  On follow up imag…Read more

]]> ee500a47be34c46c5fadad1c6d3f7010 hxcadam replied to the topic Moles on scalp in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/moles-on-scalp/#post-275722 Wed, 22 Sep 2021 17:19:09 -0400 No harm in getting them removed and biopsied if it’ll give you piece of mind.  I have a few moles on the top of my head that have been there most of if not all of my life.  Derm always is pretty thorough when checking my scalp and have never had one biopsied up there.

]]> bc3a07d72a8b5eaf9f563e55ea824ef9 hxcadam replied to the topic Stage 4 in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/stage-4-4/#post-275657 Fri, 10 Sep 2021 11:38:24 -0400 Did you go through Pfizer’s website to get copay assistance?  I have private insurance and got automated acceptance through their website when my doctor prescribed Braftovi/mektovi to me.  This is the link – https://www.braftovimektovi.com/patient-support/#financial-support

]]> b12f8f786fe238200946a0e22ed51fdd hxcadam replied to the topic Data on BRAF/Mek before Nivo/Ipi? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/data-on-braf-mek-before-nivo-ipi/#post-275632 Wed, 08 Sep 2021 13:50:48 -0400 Thanks Bubbles and Ed.

]]> 17dd0241385f633530e9ceb561d75bb7 hxcadam started the topic Data on BRAF/Mek before Nivo/Ipi? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/data-on-braf-mek-before-nivo-ipi/ Wed, 08 Sep 2021 11:10:37 -0400 Curious if there’s any data on the efficacy of doing BRAF/Mek before Nivo/Ipi.  I found a study comparing the 2 as front line therapies but not the efficacy of doing one before the other.

]]> 047884c868756e1a02746b9d47f2f51c hxcadam replied to the topic How long do Braftovi/Mektovi therapy can last? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/how-long-do-braftovi-mektovi-therapy-can-last/#post-275336 Mon, 12 Jul 2021 12:24:54 -0400 I’ve been on Opdivo since Feb 2020 and started Tafinlar/Mekinist in May 2020 in combo with Opdivo.  Current scans are stable.

]]> e8b566bc63903687e8e71e135b9286e0 hxcadam replied to the topic Treatment time limits on Taf/Mek in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/treatment-time-limits-on-taf-mek/#post-274948 Fri, 11 Jun 2021 11:51:10 -0400 3 years is great!  Definitely much longer than the average person.  I believe the majority will only see about 10-12 months on average before progression starts again.  I’m currently on Taf/Mek just over a year now and last scan looked like I was seeing new sites but have to wait for next scan to confirm (small long nodules popped up).  If you are…Read more

]]> b8387d2e2436ed9ab69383a7c0aeb589 hxcadam's profile was updated https://forum.melanoma.org/activity/p/4480/ Tue, 08 Jun 2021 17:02:53 -0400 0 866363b9fcf37745a83c3826c7accd72 hxcadam replied to the topic triplet question in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/triplet-question/#post-274896 Wed, 02 Jun 2021 13:00:47 -0400 Right out of the gate was given single agent Nivo with radiation.  Showed shrinkage in original tumors but others popped up elsewhere so was given the triplet.  Saw shrinkage everywhere for the first 8-10 months and no new sites.  Last scan in April just showed potential new sites in my right lung but everywhere else was still stable.  My ins…Read more

]]> fc21cc914822041a8304af3a98a05924 hxcadam replied to the topic Fertility after Immunotherapy in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/fertility-after-immunotherapy/#post-274676 Mon, 10 May 2021 13:55:39 -0400 I received 2 rounds of Ipi in mid 2017 (June and July I believe).  Had to stop due to colitis.  I believe the dosage was 10mg/1kg so roughly 1000mg each dose.  Was told to wait 6 months if I remember correctly before attempting to start a family.  My son was conceived in mid February and born November 2018.

]]> 266ab1af81a617db8a80b94aeb853693 hxcadam replied to the topic Immunotherapy post colitis in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/immunotherapy-post-colitis/#post-274480 Fri, 09 Apr 2021 14:43:48 -0400 I haven’t had the combo but back in 2017 at initial Stage 3c dx I had 2 rounds of Ipi at 10mg/1kg (about 1000mg).  I ended up with colitis but not in the hospital.  They stopped me after that.  In 2020 I progressed and they put me on Opdvio monthly at 480mg and have not had any side effects from the immunotherapy that I can tell.

]]> db882761fe32d35c450a4918032e402e hxcadam replied to the topic Quality of life on Braftovi / Mektovi and I in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/quality-of-life-on-braftovi-mektovi-and-i/#post-274455 Mon, 05 Apr 2021 18:27:36 -0400 I’m taking Taf/Mek currently.  It’s 4 pills of the Taf and 1 of the mek daily.  I get fevers generally on a 2-3 month basis that last for about a week.  With them usually I’ll get a day or 2 of chills that seems to only set in overnight.  Other than that though maybe some mild fatigue and mild joint pain.  I do work 10 hour days though so may not…Read more

]]> 48ac419ba9d1cab4bb96e08f13c4b16b hxcadam replied to the topic Lung Mets progression after one ipi/nivo? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lung-mets-progression-after-one-ipi-nivo/#post-274400 Tue, 23 Mar 2021 15:08:22 -0400 PET Scan from 7/19 said this which my doctor either missed or didn’t tell me about and at that point I was on the NED high and wasn’t going over my own reports like an idiot:

Lungs/Airways:  No abnormal uptake.  Left lower lobe 0.7mm lung nodule image 192, at the limits of PET resolution, subtly demonstrated in 1/2019.

 

CT scan from 1/20 w…Read more

]]> e0e3dbbd064bc420be351cacc074b4de hxcadam replied to the topic Lung Mets progression after one ipi/nivo? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/lung-mets-progression-after-one-ipi-nivo/#post-274398 Mon, 22 Mar 2021 13:46:03 -0400 I have not experienced the combo yet but with just nivo alone paired with radiation I saw good shrinkage to 2 lung mets.  I did see progression however to other sites and was put on Taf/Mek.  It’s been about a year since the nivo/radiation was originally given and my last CT scan in Jan. said this:

 

Lungs/Airways: Radiation-induced changes in l…Read more

]]> 9277b380e38bea29b862218bc360b0b7 hxcadam replied to the topic 2 years NED in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/2-years-ned-2/#post-274235 Tue, 16 Feb 2021 12:01:16 -0500 Congrats!  Keep at it!  I was 3c at dx in 2016 but at the time they didn’t have approval for Opdivo so I had Ipi for a couple rounds before side effects took me off.  I made it 3 years before recurrence with 6 month scans.  Just keep at it!  Opdivo is way better than ipi as a solo agent.

]]> 48266f2dda84df479aaa454f222de0c5 hxcadam replied to the topic Treatment for Brain Mets - Need some shared experiences please in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/treatment-for-brain-mets-need-some-shared-experiences-please/#post-274234 Tue, 16 Feb 2021 11:45:22 -0500 Your husband sounds a lot like me.  Early 2017 was my WLE and sentinel and then lymphectomy due to finding a small amount in the sentinel node.  Early 2020 recurrence in Lung, Spleen and Brain.  Brain mets were handled with SRS radiation and went on Opdivo.  Showed progression elsewhere after 3 months of Opdivo and added targeted therapy (Not sur…Read more

]]> f9b6cb987889695e28035e4de4ad807e hxcadam 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-274070 Thu, 28 Jan 2021 18:29:19 -0500 I think the US is definitely on board with early MRI scans once progressed to Stage 4 but yes its probably very hard to get insurance to agree to an MRI for a Stage 3 patient.  When I progressed to Stage 4 in Jan. 2020 I had an MRI right away which found 2 small lesions.  Got 1 SRS treatment for each lesion and today they’re saying both look to h…Read more

]]> 12e764f931b2bfba4998a1e4cab4fd00 hxcadam replied to the topic Mets to lung in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/mets-to-lung/#post-273814 Mon, 04 Jan 2021 11:23:36 -0500 Hi Kristin,

I too was diagnosed Stage 3(c) in 2016.  Back then I got 2 rounds of Ipi after the WLE/Lymphectomy.  I recurred in January of 2020 (2 small lung mets, 2 small brain mets and 1 on spleen).  I received radiation to all sites in combination with starting Opdivo.  The Lung/Brain mets seemed to have responded well to that combination but…Read more

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