Treatment Diaries Archives

Metastatic Melanoma Patient Diary Entry

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Diary Entry – Patient With Male Breast Cancer and Melanoma

I’m 72 and have lived most of my life in the Midwest, particularly Michigan, with forays to East Coast and West (New York, California) and two years in Sao Paulo, Brazil with lots of visits afterwards. Profession has been education on middle, high school and college levels as teacher and administrator. I decided when informed of my most recent illness to finally retire from university teaching in a grad teacher education program.

My first cancer was male breast. One of about 1400 a year in the U.S. Stage 2, no recurrence since diagnosis in 2003. Never worried about it returning. Second was metastatic melanoma, Stage IV, this year. Total surprise. I skipped Stages I-III with an unknown primary. Landed in my lung. All removed with a lobectomy (rhymes with my previous lumpectomy). I am now NED to hear this week after PET scan and brain MRI whether that continues to be true. I’m in the watch and wait category for further treatment–probably surgery first, then ipi*.

I don’t know how I am going to do with the program of 3 month scans. I do know I will have to live my life in 3 month chunks, but, of course, do not know how that will work psychologically. I have a very supportive wife, but she worries, too, of course.

April 2013

Had my surgery last Tuesday, back home late Thursday. Watching a good deal of snow out the window. I don’t mind at all not being out driving in it. It’s nice to be snug. We’re a snow belt city, one of the top fifteen or so in the country for total snow fall. I’ll have to look that up. Average winter just about 70 inches. I got into snowshoeing a couple of years ago at a buddy’s place in Sun Valley. Can’t make the reunion of the crowd this year.

Recovery is coming along. No exercise for another week. Then back in the pool, I hope. Can’t even walk around the block (not today, of course). Tomorrow I can drive. MelanomaDiary

“I’m feeling more and more optimistic about the melanoma. I think that’s better than looking around the corner. I have a lot going for me right now, and I’m convinced the ipi is working. Just not sure how well. I heard a doctor on a webinar yesterday say that those for whom ipi really works are like people who win the lottery. Why me? But it is you, and you’re done with melanoma for life. I’d like to be one of those 15%. I’d rather be that person than win the real lottery, no matter how big the payoff.”

As of August 2015 – Still thriving!

 

*”Ipi” refers to ipilimumab, a new monoclonal antibody drug that is being used currently in numerous melanoma clinical trials. Ask your medical team about these trials, or you can browse trials by using various trial finders such as the ones on cancer.gov or Melanoma Research Foundation.

Read more about patients and their experiences with clinical trials at www.TreatmentDiaries.com.  Real people, actual stories, shared in private so you can be more social about your health.

Melanoma Patient in a Clinical Trial

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From our partner, Treatment Diaries, this is a diary entry of a melanoma patient who participated in a clinical trial.

Diagnosis: Metastatic Melanoma in 32 year old female.

October 2013

I had a mole removed on my back, turned out to be melanoma stage III. Since that mole I’ve had 5 more removed all positive. I’ve had surgery on the first one and then lymph nodes taken out because they found microscopic cells. September 2014 is when they diagnosed it as metastatic and inoperable.

So a clinical trial is a chance for me to make a difference and potentially beat the beast. I have had two
immunotherapy drugs Interferon and now currently on Yervoy. PET scan and MRI are clean for now. I have a lot of side effects from the Yervoy which I’m on right now. Dr put me on steroids to reverse those side effects. I get rashes, colitis, headaches, fatigue, and heartburn from yervoy and muscle weakness; retain water, mood swings, anxiety, emotional from steroids.

I have a four month old baby and recently got married and moved states. A lot of changes in my life the last year and coping the best I can. I have serious moments of a break down but try to hold it together for the sake of my precious baby. Currently I am trying to take lower dosages of my steroids so I can go in for more scans. Dr says we are done with Yervoy because of side effects. But there are other treatments we can look into. That’s my story and please feel free to contact me anytime! I feel the more support I have the better my days turn out! I’m here if you want to talk I’ll listen. Sometimes that’s all I need is to have a shoulder!

January 2015

I go in on Thursday for a treatment called Infliximab.. It’s supposed to stop these side effects from the Yervoy, such as muscle aches and colitis. I’m really nervous because the shot itself has a lot of side effects from what I’ve read. Dr says I’ll only need one shot and it should help me get off the steroids which are a must! I’ve been on steroids since end of August… Right now I’m on 25 mg a day but my highest has been 100 mg. I don’t want to do the shot but I’m at a point it might be my only option. I want to feel normal again with no pills. Will that day ever come, who knows? I pop pain pills like candy and steroids like a race horse.

Starting to think I need a therapist to talk to because mentally I’m not handling things well. My husband says he believes everything will work out, but he’s not giving me the emotional support I need. I don’t think he understands… Takes care of the medical bills but as far as emotional support I’m not sure he can be there for me because he doesn’t understand my fear. Fear of limited days and wanting to enjoy life more. I feel I do the same thing over and over every day… I have a 5 month old so we are stuck in the house a lot and hubby just goes to work and comes home… Same routine everyday… I want to feel alive and excited! I want a date night or to feel sexy and I need affection, ok I’m done rambling I’ll keep an update on how the shot treats me. As far as Yervoy I’m done with it the doctor won’t let me do anymore. Too many side effects! After I get off the roids I’ll have another pet scan. More later…

 

Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.

Diary Entry – Malignant Melanoma 3B

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From our partner, Treatment Diaries, this is a diary entry of a melanoma patient first diagnosed in 2012.

Diagnosis – Malignant Melanoma 3B
Male – 57 years old
First diagnosed Feb 2012
5 operations in a 1.5 year period upgraded to stage 4 Metastatic Melanoma
BRAF POS, as of Aug 5,2013.
Fully Disabled since Oct 30, 2013
Currently on Zelboraf Clinical Trial
Been NED since December 31, 2013

My recent MRI followed by a pet scan were both clear once again! I am still on Zelboraf at 1 pill a day. I have begun using CBD oil twice daily along with all the other things I do this to help me stay healthier and to keep the beast at bay. Come the end of October, I will have been off work for 1 year, on disability/ssi for income.  I still make it to the gym 1-3 times a week and still work out with friends.  On top of that, I take rides on my motorcycle and visit family. I still have fatigue and I sometimes nap a lot still as a result of  the side effects of Zelboraf but I no longer have any evidence of disease.

Pursuing a clinical trial was scary at first but really my only option.  My only option turned out to be the best thing for me and for my family.  I hope my story will inspire others to keep an open mind and to hope for the impossible.  Hopefully this will help others see that some of what the doctors do does help for the better, I don’t know?  Well we all know this is the one club no one wanted to join, but we are in this together and tomorrow’s a new day!!!!

Still thriving as of July 22, 2015.

This abbreviated story of a melanoma cancer diagnosis and clinical trial experience which spans multiple diaries and is available on www.TreatmentDiaries.com.  Sharing your story is empowering.  Join us for completely private and anonymous exchanges about your health.

From the Diary of a Bladder and Prostate Cancer Patient

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This diary entry from our partner, Treatment Diaries, is from a man diagnosed with bladder and prostate cancer in 2000.

Diary Entry:

A year ago, my life changed significantly…I was diagnosed with stage 3 bladder cancer. Later it was determined prostate cancer had also joined the party (need to limit those medical malady invites).   The prior 12 months allowed me to  experience (against my better judgement) life’s highs, lows and a great deal of uncertainty. But with support of friends, their prayers, a positive mindset, humor, access to an incredible medical staff, and an extremely supportive wife, I’ve continued to stay upright.  Manage to stay upright despite; 12 rounds of chemo (Cisplatin sucks), bladder removal/reconstruction, losing 30 pounds in 2.5 weeks post bladder surgery, an inability to taste food during the holidays (not to mention I couldn’t drink), a dreadful winter, multiple catheters and pills, lots of pills.   Now that I think about it….I didn’t have a good time.

This week my last three month consult was completed. All the news received was the best I could hope for….no indication of cancer at this time. Now I am no longer a patient, but a patient/survivor who should share his experience with others. To all of you who posted to my diary…..THANK YOU!!  I can only hope to do the same for others!

From the Diary of a Stage 4b Melanoma Patient

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I am a male with Metastatic Melanoma Stage 4b. Clinical trials have been saving me. Latest is GSK B-RAF inhibitors. Jan07 Original Site was my left thigh. Removal, sentinel node removal, all clear. Mar09, golf ball in left groin. Removal. Lymphandectomy Jun ’09. Reoccurrence in chest Dec10. Inoperable. BRAF trial Apr ’11, still on trial.

Still thriving as of May 2015!

Diary Entry – Melanoma Patient

Amazing, when I wrote this diary title down – September 2014, I recalled how it was not that long ago that I refused to write dates. For over 2 and a half years, I lived in 3-week blocks. Couldn’t plan anything, couldn’t do anything, because I was so close to being finished. Two stints in a hospice house proved that. Yet here I am today and now I keep track of my entries by writing the date.

So Fall is upon us, the leaves have changed color and are falling in great numbers. The mornings are brisk but the afternoons get warm…well, warm for us up here, I suppose. Went for a good walk today through the forests, I just love the colors and the smells of fall. It was great.

My dizziness still eludes myself and the docs. This is good as it means Mr. C is not visiting at this time but all the same I am frustrated at not being able to get “normal” again. I think I am well enough to go back to work…well, I want to anyway but it certainly won’t work if I can’t get there without falling down.

I read another person’s post about their recovery and how the length of time it takes tends to baffle them. That really helped. The only people I know that have been to the edge like myself and have made it back just aren’t the same people they were going in and have conceded to not working anymore. I am bored without the work and being a part of something bigger. These are long days at home, long, especially when the body is working fairly well compared to what it was. Summer is gone and fall is here, next comes winter so I better find a hobby cause winters are long up here.