Call out for UPDATES! How are you doing?

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.

Call out for UPDATES! How are you doing?

Postby Catherine Poole » Wed Jul 18, 2018 8:23 am

I haven't heard from some of you in a long time and I hope that means promising news. Please let us know, even in one sentence, how are you doing?
I will start with being 8 months out losing my husband and feeling a burst of energy to keep MIF going strong with our mission.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Call out for UPDATES! How are you doing?

Postby marta010 » Wed Jul 18, 2018 1:31 pm

HI Catherine - my husband, Larry, is doing as well as we can expect 6+ years after being diagnosed with Stage IV melanoma. He is currently on dabrafenib and Keytruda after his 3rd craniotomy/gamma knife in March. Just had PET/CT and MRI scans last week and everything was stable. We welcomed our first grandson last weekend and are so grateful that Larry is still here for this milestone. Think about you and your partner often and wish for peace in your life. Take care.

Ann
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Re: Call out for UPDATES! How are you doing?

Postby Respman » Fri Jul 20, 2018 11:44 am

This is Jim D. I'm new diagnosed stage 4 in April. Brain mass removed in May and been on Zelboraf/Cotellic for 1 month now. I can tell the lymph nodes in my chest and armpit have shrunk so I feel like this is going to work for me. Some of the side effects have been a little difficult. Mostly the fatigue. I used to work 10 hour days 5 days per week. That has not been possible, but I'm blessed to work for a supportive company. Will be having a chest CT, brain MRI and PET in September to evaluate. Love this website. It has been very informative for me. Unfortunate, but still nice to know I'm not alone.
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Re: Call out for UPDATES! How are you doing?

Postby Catherine Poole » Mon Jul 23, 2018 7:11 am

You certainly are not alone. That is why we are here. One is the lonliest number! You have a great outlook and please stay in touch.
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Call out for UPDATES! How are you doing?

Postby AlanF » Tue Jul 31, 2018 8:03 am

Not much has changed for me from my last post of 10 months ago (how time flies).

viewtopic.php?f=54&t=36540&p=52336#p52336

The only difficulty I am having is hearing loss. I had a bad flu last December which impaired my hearing and that symptom never really recovered. It's like off and on> 25%-total loss, 50%-severely impaired & 25%-normal hearing. I sometimes wonder if it is the immune therapy, I seen an article in CURE magaazine that chemo has an effects on hearing, nothing on immune therapy:

https://www.curetoday.com/community/jan ... cial-world

I had my last immune therapy little over 2 years ago.

I do see a otorhinologist (at the same health system that treated my melanoma), he sees no damage to the ears. Next appointment in September.

6 month scans (full PET & MRI of the head) are scheduled next Monday & labs/onc visit the following Friday. Hopefully no surprises.

I will tell the otorhinologist to look at the MRI of the head when I see him in September.
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Re: Call out for UPDATES! How are you doing?

Postby AlanF » Mon Aug 06, 2018 6:17 pm

AlanF wrote:Not much has changed for me from my last post of 10 months ago (how time flies).

http://forum.melanomainternational.org/ ... 336#p52336

The only difficulty I am having is hearing loss. I had a bad flu last December which impaired my hearing and that symptom never really recovered. It's like off and on> 25%-total loss, 50%-severely impaired & 25%-normal hearing. I sometimes wonder if it is the immune therapy, I seen an article in CURE magaazine that chemo has an effects on hearing, nothing on immune therapy:

https://www.curetoday.com/community/jan ... cial-world

I had my last immune therapy little over 2 years ago.

I do see a otorhinologist (at the same health system that treated my melanoma), he sees no damage to the ears. Next appointment in September.

6 month scans (full PET & MRI of the head) are scheduled next Monday & labs/onc visit the following Friday. Hopefully no surprises.

I will tell the otorhinologist to look at the MRI of the head when I see him in September.



Had early morning scans and when I got home around noon had a email from my oncologist. Said scans looked great. Remain NED. So that's always good to hear.

She did say that the scans did show inflamation around my ears. Asked if I was having trouble with ear/sinus infection. I responded by telling her the difficulty I am having with hearing. She said will look at it Friday when I have my labs/clinic visit.
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Re: Call out for UPDATES! How are you doing?

Postby Catherine Poole » Sat Aug 11, 2018 11:18 am

It has been a long time in our relationship Alan, so happy you are doing well. We certainly has some ups and downs..best wishes
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Re: Call out for UPDATES! How are you doing?

Postby buffcody » Mon Aug 13, 2018 6:45 pm

Still NED over 14 months. Scans Thursday and Friday to determine if my luck holds. A study I read last week mentioned lower LDH readings (mine have always been normal), being older (75 when I started Opdivo), lower tumor mass (5 metastases in first 3 years none since), and low COG (always 0), and male as being characteristic of those who get complete responses from PD-1 therapy. So I fit the bill, though the study is not suggesting that only those with similar characteristics are going to attain a complete response.
Still having problems with balance and pressure in my head that comes on when I exercise. And still no diagnosis, though working on my chronic allergy and sinus problems and overcoming my iron deficiency anemia have improved my general sense of well-being. I also was happy to have my biliary tube replaced with a metal stent and am looking forward to getting back to the pool if I am able in a week or so.

Frank
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Re: Call out for UPDATES! How are you doing?

Postby DickK » Tue Aug 14, 2018 4:11 pm

It's almost nine years since my stage IV diagnosis and I was fortunate enough to get into a phase two clinical trial for vemurafenib in March 2010. My PET/CT scans stopped lighting up in December 2010 and the two lung tumors (scar tissue?) have been stable since February 2012.

I've managed to get my weight down to normal for my size so high blood pressure and cholesterol issues are no more. My prostate cancer is of the very slow type. Four biopsies with little cancer found and a normal PSA, I am just monitoring for now.

As to melanoma, I continue taking vemurafenib twice daily. I continue with quarterly Dermatologic exams, follow-up with oncologist every twelve weeks, and CT scans every twenty four weeks.

All things considered, I think I'm doing great, I know that's how I feel.
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Re: Call out for UPDATES! How are you doing?

Postby Catherine Poole » Wed Aug 15, 2018 6:09 am

Thanks Dick for the update! You are amazing, well you know I admire you and your humor..hope things continue to go well. And don't be a stranger here..
Catherine M. Poole, President/Founder
Melanoma International Foundation
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Posts: 10998
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