- June 15, 2018 at 1:00 am
Me: Stage iv, large lymph node tumor, a few small ones, LDH normal. Diagnosed 5/22.
I’m a week out from my first infusion of Yervoy +Opdivo. I’m feeling overwhelmed, among many other things. I slept most of the day after my treatment, was little less fatigued the next day, but had neck pain and fever Mon-Weds, which has lessened tonight.
I read this board and participate in another online support group, and have learned a lot and gotten much-needed support from the only people who can understand what I’m going through. But…
I feel so utterly uneducated when I read other people’s posts. The acronyms and knowing every bit of data of all your lab tests and basically being walking encyclopedias about melanoma…it’s so daunting to figure out how and if I can become that knowledgeable. A lot of what is said here, it’s just Greek to me. And I’m the type who likes to ask questions and learn stuff, but trust me, I didn’t have the smarts to go to medical school and it feels like I need to basically become one now.
Anyone with a stage 3/4 diagnosis who was already suffering from depression? I’ve been on medication for depression and anxiety for many years and I’m definitely not saying it’s harder on me to have this diagnosis than it is for others but I am concerned that my depression has reached extreme lows that I had never experienced a few times since this started. My cancer center offers psychological counseling specifically for cancer patients and I’m going to try and get a referral so it’s covered.
The emotional and psychological toll this is taking on me is profound. And I don’t see other people saying that in online support groups. I see a lot of people sharing about the medical challenges, but it’s not common to see people talk about feeling sad, scared, depressed, etc. Makes me feel kind of alone. Going to a melanoma support group in a few weeks and I hope that will help me, the nurse who runs it is wonderful, so compassionate.
- June 15, 2018 at 2:01 am
Hi, you’re not alone in your feelings, I assure you. I can let you know that it will improve slowly over time but I don’t think it can ever go away. Family and friends can help a great deal and live your life as best you can every day. Reach out, everyone here will help you.
Addressing the jargon, give it a little time and go to Celeste’s blog site which covers everything and anything you want to know about melanoma. I still visit her site routinely to keep up to date. Ed Williams and Janner are also great resources. Just post up and ask questions, you will get answers.
Good luck with your treatments and keep the community here posted, everyone cares.
- June 15, 2018 at 2:23 am
I don't really know what to tell you, Kathy. Melanoma sucks great big stinky green hairy wizard balls, for all of us!!!!
Even for those of us with a medical background, given the rapid changes in melanoma care and the difference between melanoma and other cancers, a steep learning curve is often part of the diagnosis. I know it sounds like a foreign language. Most of us read and re-read and ask and ask again. You might look again at the "primer" I gave you in a link before, additionally there was this link at the bottom:
http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/03/melanoma-abbreviations-and-random.html It is a pretty complete list of the acronyms we have gotten used to using.
I am glad you are looking forward to joining a support group. Many facilities have great support services.
I don't think you will find a single person on this board who has NOT been afraid, sad, or enraged by their diagnosis. And while those feelings can rear their ugly heads at various times along the way, it takes a lot of energy to fight melanoma. I found I could not fight the fight I was forced to address (including looking for treatment, fighting for access to that treatment, fighting with insurance companies for coverage of same, dealing with multiple surgeries, SRS to brain tumors, being a rattie in a trial I had to travel for….while trying to live my life, work, raise two children, etc, etc….) and still focus on all that anger, fear and sadness. Don't get me wrong…those feelings happen….and they should. And we all have to find our own way to deal with them. I guess I just decided that I was not going to let melanoma TAKE my life, until it actually took my life!!!
If you are looking for experiences dealing with the emotional aspect of melanoma most of us have plenty of those…. I was diagnosed with Stage IIIB melanoma in 2003, had another lesion in 2007. No treatment other than removal as there was none. In 2010 I developed brain and lung mets. Still no FDA approved targeted or immunotherapy available at that time. My blog has covered my story as well as all the medical advances in melanoma since. This post can still rip me a new one….written by my daughter…a senior in highschool…while I was having the upper lobe of my right lung removed: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/04/update-on-surgery.html
Post brain radiation and lung surgery, but with no treatment in sight, I wrote this: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/09/looking-forward.html
Bad scan news while looking for treatment: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2010/12/well-that-sucks.html
Treatments were not always fun (Zeno was a 90 pound, pound puppy.): http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/02/i-feel-like.html
Sometimes a rant can be cathartic: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/05/chemo-limo.html
Melanoma certainly exacts a price: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2011/07/toll.html
But you can get through: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/10/the-melanoma-avengers.html
Depression and lonliness in cancer patients and their caregivers has actually been studied:
I have no idea if this has been helpful in the least. Or…if your eyes have simply glazed over….something I wouldn't blame you for in the least!!! Still, as hard as it is now and will be at other times as you go forward…you CAN do this. You can LIVE today….AND….tomorrow. Hang in there. Ask more questions as you need. Seek the help you need to get you through. I wish you my best. Celeste
- June 15, 2018 at 11:41 am
Thank you for all the information and yes you’re right, my eyes did glaze over, guilty as charged :) You do amazing work, and I know your blog is a wonderful resource for so many here. And I have spent sometime on your site, I appreciate the links.
I think having two illnesses – clinical depression and cancer – is providing me with some challenges that I need to find some specialized help for. You’re right about seeking the help that I need and I think writing this post helped me realized that finding some specific support with managing them both is going to be critical for me,
- June 16, 2018 at 2:27 pm
I would guess that a good number of people here suffer from clinical depression and cancer. Or a family member does. I might suggest you assume that is the case, and that you are not the slightest bit alone in that double whammy.
Many blog entries by Celeste are about her personal experiences, not just medical information and I’ve discovered value in grabbing one or two at a time to read over the last months. (It’s hard to believe it’s been months and not years.)
- June 15, 2018 at 9:37 am
Hi Kathy, Celeste has given you all the educational material that you need for a complete melanoma boot camp experience!!! You will now be given one week to prepare for the test, I recommend lots of posted notes around the house to aid in prep!!! I learn something new about melanoma every day and this week I came across someone who is MRF certified in melanoma, to my surprise in comes with an actual certificate that this individual posted on another melanoma group. Well, this caught my interest and after using all my dectective skills learned over the years here on the forum, I found out that MRF actual does over a " Melanoma educator coarse". So at the end of next week just click on the link provided and your melanoma education boot camp experience will be complete!!! Do not stress over the exam, there are only 10 question and if you fail the first time, you get another attempt. Good luck!!!https://www.melanoma.org/get-involved/melanoma-awareness/certified-melanoma-educators
- June 15, 2018 at 1:03 pm
Hi Kathy, I don't have melanoma my husband does.He progressed to stage 4 a couple of months ago. I do suffer from depression and anxiety so I understand how overwhelming life can be,even when things are going smoothly. This forum has been a life saver for me. You do not need to be an expert in melanoma there are many informed people here who can answer all your questions and provide comfort and humor(Ed Williams) A month ago I was so upset and scared but all the people in this site really helped. Celeste can answer any questions about ANYTHING! I hope you can find some peace and comfort . I wish you the best with your treatment and I am sending love and good vibes your way.
- June 15, 2018 at 6:29 pm
Sorry to hear about your husband, but I'm glad that you've found this place to provide you with the support you need. I had a bad go with my depression when my mom died that is very close to what I am experiencing now, but this is worse. I have my therapist to talk to in a safe environment about what I'm feeling and I'm going to investigate getting some sessions with someone from my cancer center as well. Thank you for your kind works and I wish you and your husband all the best.
- June 16, 2018 at 6:33 pm
Beth, you won't believe it to you go and see it for yourself, the link I posted above is an actual MRF certificate coarse. I was joking about the Celeste boot camp for melanoma part, but the name does have a nice ring to it!!! Some guy on a Facebook melanoma page posted his MRF certificate like he was now ready to save the world and he was ready to open up his own melanoma clinic to give out advice to the world. I decided to look into the program to see if it was legitimate, turns out any one willing to do some MRF provided reading about melanoma facts can then take a short 10 question quiz and be certified. The coarse comes with a MRF certificate if you pass with at least 8/10.
- June 16, 2018 at 8:26 pm
Ed, Celeste boot camp would be 10,000 times harder. Don’t you think she should add quizzes to her primer? I’m in the middle of the MRF course as we speak/type, and I, too, will save the world but only if I get a cap or tote bag. Going for 10 out of 10.
- June 16, 2018 at 2:02 pm
Kathy, you know how to eat an elephant – one bite at a time. When my husband was diagnosed, I'd read for five or ten minutes and stop, overwhelmed by the mountain of information, alphabet soup, and feelings. I have depression, which became worse after the diagnosis, plus new anxiety. But logical, right?
Over time I comprehended and read more, and felt better. Not always. I stopped for several weeks after a four-legged family member was put to sleep. And that’s okay – sometimes stepping away is what’s needed.
Without the people here, I’d have a vastly different mindset. The forum – and Bubbles’ primer/blog – has provided melanoma education, comfort that my husband is receiving optimal treatment, and perspective.
You’re right – the forum is more geared toward information than feelings. That’s a good thing (nod to Martha). Because resources for emotional support and treatment are out there – including through the Melanoma Foundation (see the Support tab). But this forum is the only community with a crackerjack team of poster-experts and people who have gone through it and get it.
If you stick with the reading, you’ll integrate info and it may help smooth out some feelings. We get to a new normal, not to discount ups and awful downs. Joining a support group is smart. The cancer center our melanoma center is part of has a free program with activities and counseling for anyone affected by cancer – not just their own patients/families. We attended a melanoma symposium/casual lunch with docs and patients/families/friends. We’re not alone.
Give yourself credit for your strength in targeting and pursuing what you may need, and for your openness on the board. Reach out any time.
- June 17, 2018 at 10:50 am
Thanks Beth. There’s a lot of great information here and I think, as you say, I need to look elsewhere for a safe place to express feelings. Which is fine, having this a great informational resource is valuable enough. I did find what looks like a great book by someone who had stage 4 melanoma and was part of the clinical trials, on ipi/nivo. Here’s an interview with the author.
I also applied for the buddy program about 2 weeks ago, hopefully that will pan out.
So sorry you also had to endure the loss of your four-legged family at the same time as dealing with all of this. They are such a source of comfort, joy and most importantly, unconditional love and acceptance (ok, “unconditionally” might be a stretch when it comes to cats:))
- June 17, 2018 at 2:22 pm
Kathy, let yourself post what you are moved to post. It’s not black or white. While the psych side isn’t the primary emphasis, certainly some members include how they’re feeling and look for support. Just being here among “like” others is support too. My take? People can pick and choose what they read. Descriptive titles help.
I’ll check out the book – thank you. And members’ stories (aka posts) can be inspiring/emotional/educational. You can look at a profile and find past posts.
Many members have been on nivo or nivo/ipi. My husband is in a blinded trial – nivo or nivo/lower dose ipi – guessing the latter based on side effects (not terrible) and his doc’s comments.
Celeste’s experiences are wonderfully documented in her blog. And if I’m not mistaken – correct me, Ed? – Ed was on a blinded trial for four years! Members are great at answering questions. Mine the forum.
And thank you. It’s been rough; animals ground me, are family, just a different species. “Lap of Love,” a mobile veterinary organization that does assessment, hospice and euthanasia, all at home, helped hugely with making the end less traumatic. They’re in several locations in the U.S. Yelp reviews are beyond moving.
- June 18, 2018 at 2:58 am
Hi Kathy, I applied for the buddy program too and It didn't work out. I received an email but never a phone call. I am happy to listen if you need someone to talk to. I have struggled with depression and anxiety my whole life, I understand. I am not a melanoma expert but if you need emotional support I am here. My contact information is in my profile.
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