› Forums › Cutaneous Melanoma Community › 34 YO Male – Stage IV on 4/27/17
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Oldwife.
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- February 19, 2018 at 7:42 am
Hi Everyone,My name is Jeremy and I’m new here. My dad has been telling me about the positive results he’s read about on this site and suggested that I come on here and explain my story and see if I can find some much needed support. I’m going to tell my whole story for those interested, but you can skip ahead to the emoji for what’s happening today.
In 2008, I developed a mole on the back of my lower left calf that my wife grew suspicious of so I eventually got it looked at and the doctors took immediate action and wanted to excise immediately. So, they took a small piece to test. It was positive for melanoma so they went back in for a full excision and sentinel node.
The sentinel node was positive for micro cells so they wanted a lyphnode dysection in the thigh. They went back in to my thigh and took all the nodes out of my thigh. The remaining nodes were all negative for melanoma so my doctor decided that “chemo” was not necessary. I followed up with regular skin and blood scans every six months till I hit the 5 year mark and then went to yearly after that.
In late February of last year, I began to have back pain between my shoulder blades. It lasted so long with the pain continuing to get worse rather than better so I decided to go to a chiropractor. He seemed confident that he could help because he claimed that I was a little out of alignment but everything else in his x-ray looked perfectly fine. After 3 weeks of treatment, with the cost adding up, I decided to go see a doctor about the pain.
After carefully moving my arm around and some other smaller tests he decided I needed PT that it was likely injury based. Well that didn’t work and after 3 weeks of that and I am now experiencing enormous pain in between my shoulder blades but now also in my mid and lower back. A return visit to the doctor would call for a CT scan for he was nervous it was a heart condition. (This was due to testing very high in blood pressure as well, I was 308lbs at the time.)
After a few weeks of waiting my results had arrived and I had to go in to see him. At this moment I am very nervous because a small part of me knows it could be the c word but it’s been 8 years and almost everything in my life was looking good for the most part. So I walk into the doctors office and sit down and say “give me the good news doc” which he responds with “well I wish that I could but… Well… I’m just going to cut straight to the point. You are probably going to want to sit down for this”. A lump of nervousness explodes in my stomach and my entire body starts shaking as I sit down. “You have metastases throughout your spine and liver. It’s pretty significant and we need to biopsy the area to be sure but I think you need to be prepared that what you had in 2008 has returned”.
So … That’s what we did. A bone biopsy of the spine which if you’ve never had done is quite the experience. I was laid on a table, given a local and a sedative and with a large needle they Pierce the spine and then you hear a few clicks like they are trimming your toenails and then they are done. Well, sure as shit, Melanoma IV it is, what a frikkin’ day.
In an effort of painting a better picture for you all, it’s worth noting that my second daughter was born in April and I got a confirmed diagnosis in June. We also have an eleven year old daughter so we had taken a long break in the child creation department but while the tools were still working we decided on one more.
Anyway, after this dreadfull diagnosis my wife and I lost all composure and shared a long cry. But, things weren’t over just yet. I scheduled an appointment to meet an oncologist but she couldn’t see me for a few weeks but she was rated one of the best in town so I decided to wait. This long wait would prove to be problematic but time will tell if this was the right decision but she’s been excellent so far.
My pain would grow to unbearable proportions until my appointment finally came. As she reviewed my scans she instantly decided we needed a neurosurgeon involved and that surgery might be necessary as the t2 vertebrae had significant decay and needed immediate attention. Well it would appear we were too late as that very same night my back would fracture in 3 places and I would be rushed to ER in an ambulance. Emergency surgery would be needed to repair my spine and fingers were crossed that I would ever be able to walk again.
After being in the hospital for 10 days, I was cleared to leave and cleared to begin PT and Radiation on my spine for pain and metastases. I would receive 10 treatments before finally leaving rehab and walking with a walker out of the facility. I would eventually graduate to a cane and then to nothing at all although my spine is permanently hunched a bit now so it looks like I have little to no neck now and by the end of the day my head is usually drooping down.
Upon completion of rehab in July I would begin on a regimen of keytruda every 3 weeks. After 4 infusions, we took additional scans to find that everything had shrunk and a few of which were as much as half the size as before. Although, due to excessive side-effects we decided to skip a treatment to stabilize my body again. Once that was done my oncologist decided to start me on zometa every 6 weeks and keytruda back on for every 3.
Well, let me tell you. I am not a fan of the zometa as that causes me to have pain EVERYWHERE in body. Joints, muscles, bones with it amplified anywhere that moves. But I would endure do to the positive results we we’re having.
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- February 19, 2018 at 7:44 am
🙂 😉 🙂 😉 🙂 😉 🙂That brings us to now. I had a scan in mid January and things are still shrinking and by quite a bit. Every area of growth had seen a reduction of around 1/2 or more. However, my spine is highly ravaged by this disease and my t7 and t11 are looking worse now that the cancer is dying off and there is even less stability in these bones. The neurosurgeon says we are doing okay and he’s not ready to do anything because another trip in would mean major work and he doesn’t want to slow the progress made by having to be off keytruda or causing more and more pain. So, for now no new surgery but who knows what the future holds.
For now though, I’m struggling with a lot of things. First of all, this disease has me an emotional mess right now. I need to find a local resource to speak with because I cry almost daily now and before you couldn’t get me to cry if you wanted to. I’m taking 100mg of effexor right now to deal with all of this and am on a decent amount of oxy just to get through each day. I had my first long night up with friends in a long time Friday night and it really wreaked havoc on my system because I’ve been in serious pain ever since. Mostly joint and muscle pain around my ankles and knees which is making walking near impossible to handle.
This experience/journey/battle whatever you want to call it, is really taking it’s toll on me. Things look better but things don’t necessarily feel better. I’m already on a boatload of pills and have decided to give cbd oil a chance as well to see if it makes a difference in my day to day. However, with not really anyone to talk to who understands, I find myself leaning heavily on my wife and sharing all my pains and gripes. And frankly, I think it’s gotten to the point of straining our marriage because she feels I’m always being negative and need to find the positive. Which she is right, I still have a lot to be thankful for and be happy about I just have a lot of fears right now.
I worry this drug is going to stop working.
I worry I need to skip another treatment as the joint pain right now is through the roof and is escalating far beyond my daily meds for my back.
I’m obviously worried about my girls
I worry how long I’m going to live.
Can I be NED and live a full life?
And much much more. It scares me constantly and I’m gonna sound like a complete wuss but most days I just want to cry and hug someone. What do y’all do when your feeling like this? Are there daily online support groups that use webcams or something out there? I feel like I’m not finding the right resources or talking to the right people.
Hopefully my dad is right and this place is just what I needed.
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- February 19, 2018 at 3:24 pm
Hi Jeremy, my first thoughts are get the pain under control, this might mean getting a second opinion maybe at a teaching hospital. I googled your Hickman location and I see that University of Chicago is not too far away. Dr. Jason Luke and his team there are some of the best in the US when it comes to trials and options and basic knowledge of Melanoma. Here is a link to his profile and I wish you the best in the journey!!! Ed http://www.uchospitals.edu/physicians/jason-luke.html
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- February 19, 2018 at 5:49 pm
I actually have an ongoing second opinion going with Dr. Fecher at the University of Michigan. So my oncologist regularly communicates with her to ensure that they are both on the same page. But I definitely appreciate the advice. It’s going to be a long, hard journey but I’m hopeful that my family will persevere and beat this bastard of a disease. -
- February 19, 2018 at 4:59 pm
Hi, Jeremy,
I had 30 infusions of Ketruda, which worked for me. I'm thinking that your muscle and joint pain is from Keytrda not Zomenta. I haf terrible pain in my muscles and joints, and still have residual pain a year after stopping treatment. I always felt that the pain was worth it, but yours may be worse. God bless you.
Cheris
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- February 21, 2018 at 2:56 pm
Thanks for sharing Cheris, it's nice to finally have a group of people who share even the slightest journey as you because so far it's been quite difficult. I reached out to a local charity here in town called "Cancer Connection of Northwest Ohio". They are a very small non-profit group who means well but they have a lot to take on for such a small group and since they don't specialize in melanoma their stuff is all over the board. The have a supposed mentor program and 6 weeks later, they still havn't found the "right" mentor for me they say. I keep hearing about how they have leads but nothing materializes.
As for the joint pain, I actually think it's both at this point. I've looked up the side effects of zometa and joint pain is certainly on the list. It makes sense because it feels like arthritis the day after I get zometa/keytruda. Zometa is meant to increase bone density, so if it's increasing my bone density around my joints then it would definitely cause some stress trying to move those bones. Pain is a tough thing, and it's very difficult to manage because it's always changing. We had my oxy dialed in to address my back pain which it still is doing a good job of that, I don't think I could lower my oxy just yet as it's doing a job. It's all the extra pains that really rack up the emotions and get me feeling sorry for myself I guess. Because those ones can't be controlled by anything I have short of knocking myself out which sleeping is not an answer. All the meds I'm on already make me tired all the time. So I pretty much just tough it out the best I can and if I can't then I stay home an rest until I can. I tell you what, I wouldn't wish this on my worst enemy. I feel strong enough to beat it but wow, I've never experienced anything like this and every single day on top of that, it's exhausting. Well thanks for sharing your journey, I just need to find a way to keep on going because I really have had great results so far.
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- February 19, 2018 at 5:01 pm
Hi Jeremy,
I am usually just a lurker learning so much from all on this board and I don't have much to contribute but I wanted to reach out. I'm so sorry for all that you've been through. I myself was a late recurrence melanoma patient as well so I completely understand the shock and fear that you are experiencing. I also have a young family at home and have experienced all those moments of fear that you mentioned in your post. I just wanted to reach out and let you know that you are not alone in how you are feeling and I hope you find some comfort here on this board. I know that there are many days that I find great comfort coming here.
There are many long term stage iv survivors on this board so I always take comfort in that fact. As well, the new treatments out there are changing the face of this disease.
As for the mental side of this disease, it's tough. I have heard mention of others talking about support groups, perhaps counselling is an idea as well.
I'm sure many others will chime in with ideas and options for you to consider. I am happy to hear that the keytruda is working so well for you, albeit with some pretty intense side effects.
Hang in there, melanoma is a beast but you can beat it!
Nancy
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- February 21, 2018 at 3:07 pm
Thanks for coming out of your shell for me Nancy
it means a lot. Even though you might not think you have much to contribute, but that's where you are wrong. Hell, this little message alone, helped so much. Imagine how many others on this board could get a small pick me up just from a little note from Nancy. You already contributed so much to my life/story. It's amazing to hear we have many long term stage IV's here on the board because it gives me a lot of hope that we will get there eventually and that I just need to be patient and weather the terrible storm I'm in but one day there will be rainbows. -
- February 24, 2018 at 4:11 am
Sorry that I double posted back to Celeste; forgive me.
Jeremy, my husband has been using a very pure form of CBD oil and this appears to be helping. Since he started taking it, about 6 months after he began Taf/Mek, he has noticed a lot more well-being, to the point he can sometimes even ski a little, or walk the dogs on the snowy golf course. He has had no pain issues. I know this is anecdotal, but we researched effectiveness (such comparisons as I could find) on as many 'natural' treatments as we could , and CBD had the best stats and the longest history of use. It might be a useful complementary treatment; however YMMV.
One of the most helpful things about this forum is the sheer amount of reading on medical research that folks like Celeste have done; invaluable when considering trying this diet or that treatment.
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- February 19, 2018 at 4:58 pm
Hi Jeremy – I'm so sorry to learn about what you've been through but want to tell you that: 1) your dad was right, you've come to an excellent place to learn more about your illness and find the support you need, and, 2) yes, you can become NED and live a full life again. Everyone is different and responds differently but, so far, it sounds like you are an excellent responder, which is great!!
I'll tell you a bit about my sister (you can read more on her profile) – like you, her stage 4 progression presented with a fractured vertebrae (T12) and mets to 10 others (Dec. 2014). She also had radiation for the pain, which lessened it considerably but, yes, the radiation and the mets themselves take such a toll her T5 later fractured too during a round of severe vomitting. She also had mets throughout her body – in the liver, lungs, spleen, pancreas and other bones (ribs, femur, shoulder). She also went on to develop brain mets. So – a pretty bad prognosis. BUT – she had radiation for her brain and immunotherapy – 2 ipi-nivo combo infusions/ nivo only since – for all the rest and has been NED since last fall.
Originally, she was given morphine for her back pain but she took herself off. If you can do anything to lessen your oxy use, it might be helpful because it is soooo addicitive. She does use a CBD topical cream and it works to some degree (almost instantly). She tried an "oil" product to see if it would help her sleep but it just left her feeling "woozy" and didn't work at all (for sleep or pain control).
She was also put on a myriad of other things for sleep aids – none worked very well but at least one of those was an anti-depressant. It didn't work for sleep and it certainly didn't work for depression she was feeling either. Like you, she also had crying bouts that she just couldn't understand, but ultimately, her docs determined it was the steroids she's on that wreak havoc with her emotions. It's all now much better but it does take time!! You don't mention if you're on steroids (forgive me if I missed it) but it's very commonly used to treat side effects, so perhaps you are and maybe it is behind your "weepinesss."
I think everyone goes through this disease differently Jeremy and if crying helps you at times, then "get it out" – I know I cried a river and it was not happening to me, I was just a caregiver – not possibly facing the end of my life and not feeling the physical pain. But end those bouts with positive thoughts and truths you know – that the treatment is working for you and it's not always going to be this way!!!!!!
I wish you the best possible outcomes!!!!!!!
Barb
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- February 19, 2018 at 10:30 pm
Hi Jeremy, I'm sorry for your troubles. You have a lot going on in your life right now, in addition to the mega-monster of melanoma. In addition to this board, which is very supportive and brings a lot of knowledge to the table, you might want to contact the American Cancer Society or simply Google online for local cancer support groups that you could join/participate in. If you get in a good one, you might find additional support benefits of knowing other folks in your area who are fighting cancer. Keep in touch, Carol
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- February 20, 2018 at 12:10 am
Jeremy, thanks for sharing your story. If you're curious, you can see mine by using the search function on this fourm (started here in August 2013). Two quick thoughts. First, different strokes for different folks, but I've found mindfulness meditation to be helpful for managing the psychology of being a Stage IV cancer patient. It isn't a panacea–but it does help take the edge off in a noticeable way. I'd recommend taking a course through a university or teaching hospital. Second, for the joint pain–agreed, it is most likely from the Keytruda. Look through recent-ish posts from me, Jubes and Niki (cancersnewnormal). We've each found different solutions. Mine is currently methotrexate and 5mg/day of prednisone. You can also discuss extending the period between Keytruda treatments, e.g., every 12 weeks instead of every 3. Best wishes for continuing good results from treatment.
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- February 20, 2018 at 12:36 am
Oh my goodness, Jeremy! That's a lot of mess for sure. I understand being a person with a thin cutaneous melanoma lesion with a micro positive sentinel node (2003), a second cutaneous lesion (2007…very close to 5 years!!!!), then BAM!! brain and lung mets in 2010!! BUT…the big news is that with SRS to the brain, surgery to the lung and Nivolumab (Opdivo) [the other white meat….aka anti-PD-1] from Dec 2010 to June 2013…and I remain NED!!!
So….hug your children every night. Crying is okay. Keytruda can be your answer. There are other options if it isn't. Here's a primer I put together that might give you some info (or not):
And stangely enough….hope springs from odd places:
Association of body-mass index and outcomes in patients with metastatic melanoma treated with targeted therapy, immunotherapy, or chemotherapy: a retrospective, multicohort analysis.
McQuade JL1, Daniel CR2, Hess KR2, Mak C3, Wang DY4, Rai RR5, Park JJ6, Haydu LE2, Spencer C2, Wongchenko M7, Lane S3, Lee DY3, Kaper M3, McKean M2, Beckermann KE4, Rubinstein SM4, Rooney I7, Musib L7, Budha N7, Hsu J7, Nowicki TS8, Avila A9, Haas T3, Puligandla M10, Lee S10, Fang S2, Wargo JA2, Gershenwald JE2, Lee JE2, Hwu P2, Chapman PB11, Sosman JA12, Schadendorf D13, Grob JJ14, Flaherty KT15, Walker D9, Yan Y7, McKenna E7, Legos JJ3, Carlino MS16, Ribas A8, Kirkwood JM17, Long GV18, Johnson DB4, Menzies AM18, Davies MA2.
Lancet Oncol. 2018 Feb 12.Obesity has been linked to increased mortality in several cancer types; however, the relation between obesity and survival outcomes in metastatic melanoma is unknown. The aim of this study was to examine the association between body-mass index (BMI) and progression-free survival or overall survival in patients with metastatic melanoma who received targeted therapy, immunotherapy, or chemotherapy.
This retrospective study analysed independent cohorts of patients with metastatic melanoma assigned to treatment with targeted therapy, immunotherapy, or chemotherapy in randomised clinical trials and one retrospective study of patients treated with immunotherapy. Patients were classified according to BMI, following the WHO definitions, as underweight, normal, overweight, or obese. Patients without BMI and underweight patients were excluded. The primary outcomes were the associations between BMI and progression-free survival or overall survival, stratified by treatment type and sex. We did multivariable analyses in the independent cohorts, and combined adjusted hazard ratios in a mixed-effects meta-analysis to provide a precise estimate of the association between BMI and survival outcomes; heterogeneity was assessed with meta-regression analyses. Analyses were done on the predefined intention-to-treat population in the randomised controlled trials and on all patients included in the retrospective study.
The six cohorts consisted of a total of 2046 patients with metastatic melanoma treated with targeted therapy, immunotherapy, or chemotherapy between Aug 8, 2006, and Jan 15, 2016. 1918 patients were included in the analysis. Two cohorts containing patients from randomised controlled trials treated with targeted therapy (dabrafenib plus trametinib [n=599] and vemurafenib plus cobimetinib [n=240]), two cohorts containing patients treated with immunotherapy (one randomised controlled trial of ipilimumab plus dacarbazine [n=207] and a retrospective cohort treated with pembrolizumab, nivolumab, or atezolizumab [n=331]), and two cohorts containing patients treated with chemotherapy (two randomised controlled trials of dacarbazine [n=320 and n=221]) were classified according to BMI as normal (694 [36%] patients), overweight (711 [37%]), or obese (513 [27%]). In the pooled analysis, obesity, compared with normal BMI, was associated with improved survival in patients with metastatic melanoma. The survival benefit associated with obesity was restricted to patients treated with targeted therapy and immunotherapy. No associations were observed with chemotherapy for progression-free survival and 1·03 for overall survival). The association of BMI with overall survival for patients treated with targeted and immune therapies differed by sex, with inverse associations in men, but no associations observed in women.
Our results suggest that in patients with metastatic melanoma, obesity is associated with improved progression-free survival and overall survival compared with those outcomes in patients with normal BMI, and that this association is mainly seen in male patients treated with targeted or immune therapy. These results have implications for the design of future clinical trials for patients with metastatic melanoma and the magnitude of the benefit found supports further investigation of the underlying mechanism of these associations.So! Big men can win!!! Not my usual line of approach when chasing health, but today….it sounds good, right????!
If you want a more esoteric version of hope…try this route: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/01/part-2-ratties-and-hope.html
Poem thanks to my daughter who was 10 (my son was 12) at my diagnosis. Glad your dad sent you our way. There are amazing people here who have survived incredible things. You do have hope with your current treatment. And there are others, beyond your current therapy, that many here can help you find should you have the need.
I wish you my best, Celeste
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