Melanoma Research Foundation | anxietyalldaylong | Activity https://forum.melanoma.org/user/anxietyalldaylong/activity/ Activity feed for anxietyalldaylong. Mon, 06 Apr 2026 15:01:26 -0400 https://buddypress.org/?v= en-US 30 hourly 2 1531a593804153c19a43daf024a681d3 anxietyalldaylong started the topic Sadly questioning my results in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/sadly-questioning-my-results/ Sun, 08 Oct 2023 13:27:06 -0400 Hi everyone !

I am very anxious about my recent scan. I have been on keutruda for 1.5 year now, had my pet ct two weeks ago and took my results on Friday.

My previous mets have disappeared except a mass on my lung, which was there for all the previous scans and which had a partial response since a year ago, with both reduction in size and FDG…Read more

]]> 978fc8110febdb7a626a3d2f641417fa anxietyalldaylong replied to the topic Anxiety is ongoing in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/anxiety-is-ongoing/#post-278144 Mon, 23 Jan 2023 08:14:56 -0500 Thank you so much for your reply Celeste ! I really hope it’s nothing because I am really scared to leave my husband and kids behind !

Is it generally a usual thing that happens during immunotherapy ? Shouldn’t it have already shown in the first months ? Why after one year ? And also is it possible for the LDH to rise for another reason ? I…Read more

]]> 01fdc3d58298e673a188257dfec7f425 anxietyalldaylong started the topic Anxiety is ongoing in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/anxiety-is-ongoing/ Sat, 21 Jan 2023 13:38:50 -0500 Hello there ! For those who don’t know me, I had been diagnosed roughly 2 years ago with nodular melanoma on my chest, which quickly progressed to stage IV and was put on pembrolizumab. I have been on this treatment for around a year now.

My recent scan showed response of my lung mets (some of them completely disappeared) and continued response…Read more

]]> 1a0dc0a35d463fbb7cda3a86affa28d2 anxietyalldaylong replied to the topic Covid question, please help !!! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/covid-question-please-help/#post-277075 Mon, 01 Aug 2022 18:04:50 -0400 Thank you so much my dear friends for your kind replies ! I spent another 2 weeks full on anxiety, I am sorry I am late to reply. Thankfully everything went well, my onc prescribed me the paxlovid and after 2 days I felt much better.

Then of course my anxiety hit again and I was scared of rebound, so more sleepless nights for me ! I hope…Read more

]]> a58468a4cfa116563f70ae876958fb81 anxietyalldaylong started the topic Covid question, please help !!! in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/covid-question-please-help/ Fri, 15 Jul 2022 12:22:19 -0400 Hello guys ! I am stage 4 on pembrolizumab, with good response and shrinkage of most of my tumors up to now.

Unfortunately 2 days ago I tested positive for covid ! Now I am really scared that maybe this virus in my body will make my immune system crazy and stop the immunotherapy from working ! Is this possible ?

Has anyone else tested positive…Read more

]]> 69494a706a8f0de73427f23c4f169e06 anxietyalldaylong replied to the topic So anxious over imminent scans and immunotherapy failure !! in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/so-anxious-over-imminent-scans-and-immunotherapy-failure/#post-276956 Thu, 07 Jul 2022 06:50:27 -0400 It’s amazing how many mistakes can happen without the patient being informed !

Regarding the report, my onc believes that the reason for not writing a specific suv is beacause the value seems to be the same with the overall FDG-avidity of the lungs, so he is not sure whether this avidity is specific to the nodules. He says the avidity is not…Read more

]]> 715e948e78ee777905da167b2aefbe58 anxietyalldaylong replied to the topic So anxious over imminent scans and immunotherapy failure !! in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/so-anxious-over-imminent-scans-and-immunotherapy-failure/#post-276953 Wed, 06 Jul 2022 18:49:44 -0400 Hello dear Ed ! Thank you so much for making this great effort to reply to my post ! Thank you so so much, this means a lot to me !!!

This is the report of my scan:

Physiological supra- and infra-tentorial glucose utilisation. Mastoid cells and paranasal sinuses free. Cervical lymph nodes without enlargement or metabolic pathologies.

Mixed…Read more

]]> 470a68c2b2a80d07c6d87ae092895403 anxietyalldaylong started the topic Subcutaneous reaction ??? in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/subcutaneous-reaction/ Thu, 14 Apr 2022 08:36:45 -0400 Hi everyone ! I have been on keytruda for 6 months and my last scan showed stable disease with new ground glass nodules in the lungs. I have done ctDNA which was negative so my doc says that it’s probably a reaction from the treatment.

I have had cutaneous reaction all over my body for the last 2 months. In the last 3 weeks I have noticed small…Read more

]]> afb048636f90d7a5de46788fa44a560f anxietyalldaylong replied to the topic Brand New Stage 3B in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/brand-new-stage-3b/#post-276492 Fri, 18 Mar 2022 16:43:36 -0400 Hi Mia ! I had thyroid problems with pembrolizumab as well, it started with hyperthyroidism and then progressed to hypothyroidism. It’s a fairly common side effect of ICI and usually treatment can continue. Also do keep in mind that your thyroid hormones should be monitored closely since hyperthyroidism can easily convert to hypothyroidism and…Read more

]]> 849449fc35d5b39a84e12df98733965d anxietyalldaylong replied to the topic True local scar recurrence in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/true-local-scar-recurrence/#post-276491 Fri, 18 Mar 2022 16:38:18 -0400 Hello ! I don’t have a personal experience with true scar recurrence but from what I know it is indeed defined by recurrent radial growth very close to the previously excised melanoma. It is not considered a metastasis and restaging is initiated with WLE and sentinel lymph node biopsy. So there is no need to panic ! It is described in formal…Read more

]]> 8f653a031ba7d2084e96ea3be7757cef anxietyalldaylong replied to the topic Another punch in the gut in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/another-punch-in-the-gut/#post-276489 Fri, 18 Mar 2022 14:33:09 -0400 Thank you everyone again for your kind replies, you don’t know how much strength you’re giving me !!!!

The ctDNA analysis came back negative. Is this a good sign ?

]]> c6f7d20c45abb3628bd2215dca39bb63 anxietyalldaylong replied to the topic Another punch in the gut in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/another-punch-in-the-gut/#post-276473 Mon, 14 Mar 2022 20:10:09 -0400 Sorry I have seen that Celeste has already recommended this. Celeste do you know how often I can do this to see the trend on the levels, since I don’t have a baseline value yet ?

]]> 706881e0c407d2d03bd08486c083e7e4 anxietyalldaylong started the topic Another punch in the gut in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/another-punch-in-the-gut/ Sat, 12 Mar 2022 15:18:40 -0500 Hello everyone ! I am stage 4 under keytruda. My recent ct showed a substantial increase in size of one of my rib/chest wall mass with a linear ground glass opacity on its lower part and multiple new bilateral nodules in my lungs. Most of them are ground glass.

My onc doesn’t want to switch treatments so I will be getting another scan in 2…Read more

]]> fdefcc76fc3dbf3ea96f5a6e4d997100 anxietyalldaylong started the topic Imaging question ? in the forum General Melanoma Community https://forum.melanoma.org/forums/topic/imaging-question/ Fri, 04 Feb 2022 14:43:31 -0500 Hi everyone ! I wanted to ask how often does your oncologist order imaging tests ?

I am stage IV and I had a scheduled imaging test at 4 months after keytruda treatment. But my extraordinary luck strikes again and 3 days before I get a notice that I am a close contact of a covid patient. Fast forward 10 days later, I get a pcr and it’s positive,…Read more

]]> ecf48379a3ce94a2c585995636a98d89 anxietyalldaylong replied to the topic So anxious over imminent scans and immunotherapy failure !! in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/so-anxious-over-imminent-scans-and-immunotherapy-failure/#post-276197 Sun, 09 Jan 2022 20:10:25 -0500 Thank you so much both of you for your kind help ! I feel a little better reading these sources. I hope everything will go well for everyone and this year will be better !

]]> def9f81a86d5aee930cfce43381c90e9 anxietyalldaylong started the topic So anxious over imminent scans and immunotherapy failure !! in the forum Cutaneous Melanoma Community https://forum.melanoma.org/forums/topic/so-anxious-over-imminent-scans-and-immunotherapy-failure/ Wed, 05 Jan 2022 19:57:09 -0500 Hello everyone !

I was diagnosed with nodular melanoma last year on my chest, which went to stage IV 3 months ago. Mets in skin, lungs and bones. I started keytruda and I am now on the 5th cycle, ready to get my next scans next week.

I have been asymptomatic when it comes to the disease, but had mild skin rash and severe oral mucositis which…Read more

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