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Cancer sucks. Cancer treatment sucks. But how can we make light of the situation?

My personal cancer history involves 4 surgeries, 1 dose of immunotherapy because of hypophysitis, and 6 weeks of radiation treatment. I've been in a holding pattern since last summer because nothing is there, but nothing is not there either. So we wait and watch to make sure that little bit of nothing that keeps popping up on the scan continues to be nothing.

 

But on to my point. What side effects have you had that are not that bad...or even kind of ok.

For example, when I was on radiation treatment on my parotid area, I loss my sense of taste. It was crappy. Everything tasted crappy. Food was reduced to just texture, and who knew that the texture of mashed potatoes was revolting. Because of this I didn't want to eat and so I lost weight. I lost the weight that I had gained while on high dose steroids from my hypophysitis. WIN! My sense of taste did eventually come back, but not the weight. :D

Speaking of hypophysitis, my hormones got a little screwy. I am stuck on thyroid replacement and cortisol replacement probably for life. On the up note, I haven't noticed much in the way of armpit hair and my skin is WAY less oily, so much less that I don't feel the need to shower as much as I use to. DOUBLE WIN!!

So that's my list. What kind of side effects do you not mind?

~April https://www.miakascreations.com

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MovingOn's picture
Replies 1
Last reply 7/21/2018 - 2:15pm
Replies by: MovingOn

Hi, hoping the best for everyone in this melanoma fight.

I’ve had two Nivo (Opdivo) infusions at the 4 week interval (third infusion will be Wednesday). It seems like every little skin scratch that I get is becoming infected (then antibiotic ointment helps). I must have 5 infected scratches at any time (e.g. mosquito bites get infected, small pimples get infected instead of their typical pattern of resolving within days). The thing which concerns me is that the infections are causing my lymph nodes to swell (then they shrink again within 4 days). I’ll see my melanoma specialist on Wednesday and she already knows what I’m experiencing. So I wanted to ask if anyone else on Nivo has had a similar experience?

I was on Keytruda for 5 months previously and didn’t have this experience, but it also could be something happening in me and not a different effect between Keytruda and Opdivo.

 

All the best,

Danny

2018 is a new year!

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Replies by: kst

Because this is super important for so many of us (and I don't want any of you to freak out if you should see either of these reports in any sort of dramatic headline!!!!) I put together this post:  

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/07/do-glucocorticoids-or-dexamethasone.html  

I am far from the end all/be all here!!!  But, I have put together "my take" on what these two reports are saying, with my overall conclusion being this:  

'...When something seems simple in melanoma....we should realize, "NOPE!  Melanoma gonna be crazy!  You'll see!!!"  Still, these are only two studies among YEARS of other research that indicates treatment of side effects caused by immunotherapy, with steroids, did not diminish the good response in patients with melanoma.  And, like the first report above, we have some indication that side effects may even be an indicator of a good response AGAINST melanoma. Additionally, if you are dealing with a potentially deadly side effect...and you die from it because it went untreated....how good is your outcome going to be then????  However, I do think these results tell us that we should continue to look at this issue and be as conservative in management of side effects with steroids (ie doing so only when really needed and with the lowest effective dose) as possible!'

For what it's worth....  Check out the reports if you are interested.  Hang tough and have a great weekend!!! - c

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mrsaxde's picture
Replies 6
Last reply 7/21/2018 - 11:10am

I concluded three days of driving the 2.5 hours or so each way to Bethesda today with a meeting with my doctors at NIH. Mixed news again.

At first they were nervous about my post-radiation brain scan. My local radiation oncologist let me get that done at NIH because I had this follow up coming up. Dr. Goff was a little concerned about a couple of things, but a call and quick conversation with the radiation oncologist put those concerns to rest. A good thing.

I had been on pins and needles for several weeks because within a week or so of my last scans in May I felt what I believed to be another cancerous lymph node below and to the right of my navel. Although that was noted by the radiologist as a soft tissue lesion and potential metastasis, Dr. Goff and her team compared this scan to my previous scans and she said it had been there for a while and really hadn't increased in size. (On the radiology report it said it was slightly larger. A difference in measuring techinque, maybe?) Dr. Goff explained that I would have lost some muscle during and after the treatment, and that now I could notice this lump whereas before it may have been buried in the muscle and fat. It was a big relief to hear all that.

The main lesions in my chest have increased in size slightly overall. One is unchanged to slightly smaller, the other slightly larger. Not what any of us wanted to see, but it means it's not time to push the panic button yet. So I'm still classified as "stable disease." There is a very slight possibility she said that the tumors could begin to shrink between now and my next follow up, but that I shouldn't expect or count on that, as it is very unlikely.

The spot that has been showing up on the head of my right femur is unchanged, although still considered suspicious for metastasis. And for the second scan in a row there was no mention of a similar spot that had been seen earlier on the left Iliac crest of my pelvis. Last time I was told that it may not have been visible due to the "cut" of the MRI, but as a layman it seems unlikely to me that it wouldn't show up on two scans in a row if it was still there. But again, I'm not the expert.

Dr. Goff said she plans to visit the lab and ask if they are doing anything new and exciting with my cells that could potentially work better for me. I assume that would mean going through this process again. That may be a tough call on my part. I handled it once but now I know how it makes you feel I don't know if I would have it in me to do again.

So that's what's up with me. I hope everyone is getting a chance to enjoy this beautiful summer!

-Bill

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Hi all,

I am currently Stage IV wiith liver, lung and intestinal mets. Just wanted to post for anyone considering the new BRAF/MEK combo.  I started Braftovi/ Mektovi on July 14th.  So far, not too bad.  Headaches that come and go.  I am also receiving Keytruda infusions every 3 weeks.  Will keep updating for anyone considering this treatment.  Hoping this is a treatment that will help many of us reach that NED status.  Fingers crossed.

Have a great day everyone!

Vince

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VinceMart's picture
Replies 3
Last reply 7/21/2018 - 11:45am

Hi all,

I am currently Stage IV wiith liver, lung and intestinal mets. Just wanted to post for anyone considering the new BRAF/MEK combo.  I started Braftovi/ Mektovi on July 14th.  So far, not too bad.  Headaches that come and go.  I am also receiving Keytruda infusions every 3 weeks.  Will keep updating for anyone considering this treatment.  Hoping this is a treatment that will help many of us reach that NED status.  Fingers crossed.

Have a great day everyone!

Vince

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GeoTony's picture
Replies 5
Last reply 7/21/2018 - 5:36pm

Hi all, just sharing some good news, my latest scan shows an overall reduction in tumour burden and more significantly a 1" lung tumour has "melted away", just had to share, keep up the fight, it's been 18 months of treatment, lots happened initially, then appeared to plateau, previous scan showed some unusual lung activity, "coalescing mass"and I've been short of breath when exercising for over 3 months, so this is superb news.

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Suebette4467's picture
Replies 12
Last reply 7/21/2018 - 11:50pm

My doctor has suggested getting a port in my arm for my treatment. I was wondering anyone's thoughts of experience with or without port?? Thanks

Susan Bette Hall

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/21/2018 - 10:31pm

I'm 25 and I had a Stage 1 melanoma excised about a month ago. It was barely anything... my doctor called it "more of an inconvenience than a crisis". And yet... I can't stop obsessing over every other mole on my body. I think that issue is that my Dermatologist was completely shocked that it came back as melanoma. It was the tiniest little black dot - it didn't fulfill any of the ABCDE criteria. He says he only biopsied it because it popped up recently. I had another one biopsied at my next visit - and again he said, "I really don't think this is anything, this is just to make you feel okay about it" - and it came back as a dysplastic nevus. So I'm left feeling like there's no way to really know if something is up. 

My dermatologist has said that I should trust my gut and if I want him to biopsy something, he will. But I'm nervous that, given free reign, I'll honestly want to biopsy every mole on my body... and as a red-head, freckle-covered person, that's going to be a lot of little holes. I know the whole, "look for anything new or anything that changes", but when you have inumerable freckles and dozens of moles, it's really, really hard to know what's new. I'm driving myself crazy every week trying to remember if some mole I just noticed is new or not. 

So I guess my questions are... a.) How do you not want to cut every mole off? b.) How many biopsies did you ask for in the first few years after your diagnosis?

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Redo.. forst got posted as Annonymous by mistake...

Hello... I posted about gamma knife the other day.. but realized I am not really sure how concerned we should be rearding a brain met appearing.. 2 years post gamma knife and 2 years into Immunotherapy? My mom is not BRAF positive. Her initial brain mets were 3 and small. Now 2 years later as far as we know there is 1. Per my last post going to talk to Dr about not coming off immunotherapy as planned. But I am not sure at this stage of the game what  it means when Brain Met comes back.. what the overall trend is. is it possible they will come back more and the immunotherapy has lost its umph so to speak...?

To be honest the immunotherapy has become such a routine and Mom has been doing great overall with everything else calmed down. so its all felt pretty low key compared to others tough roads...I dont want to be naive though...she started at stage 1 and became stage 4 and we were not expecting that. I also understand that for other types of brain cancers this would be a very not good scenario.. but melaoma seems to be a little different..

Any input on mets recurrence while on immunotherapy or couple of years out appreciated.

Thanks so much!

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Hello... I posted about gamma knife the other day.. but realized I am not really sure how concerned we should be rearding a brain met appearing.. 2 years post gamma knife and 2 years into Immunotherapy? My mom is not BRAF positive. Her initial brain mets were 3 and small. Now 2 years later as far as we know there is 1. Per my last post going to talk to Dr about not coming off immunotherapy as planned. But I am not sure at this stage of the game what  it means when Brain Met comes back.. what the overall trend is. is it possible they will come back more and the immunotherapy has lost its umph so to speak...?

To be honest the immunotherapy has become such a routine and Mom has been doing great overall with everything else calmed down. so its all felt pretty low key compared to others tough roads...I dont want to be naive though...she started at stage 1 and became stage 4 and we were not expecting that. I also understand that for other types of brain cancers this would be a very not good scenario.. but melaoma seems to be a little different..

Any input on mets recurrence while on immunotherapy or couple of years out appreciated. 

Thanks so much!

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Replies by: SOLE, Bubbles

Sorry if this has been posted previously but if not thought everyone would find this interesting.

https://www.bbc.co.uk/news/world-australia-44868333

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Hi all, 

First of all I wanted to say that my situation doesn’t compare to most of yours and how strong you all seem to be during these times. I appreciate any advice/encouragement that can be given. In Dec. 2016 I was dx with 1.5mm MM on my right upper thigh, negative SLNB. Fast forward to now I have had several biopsies and a major one being right next to my WLE/original melanoma scar. When the biopsy near my scar was done it was a deep excision and the area has been swollen since (bx done 12/2017). There is a hard square shaped lump in that same area that feels hard, but is painful and seems to increase in size with irritation. The area is very tender to touch and is warm. I had an appointment today with my dermatologist and he is recommending an oncology  referral and was asking me if I had any scans done, etc. He scheduled me for an excision at the end of August. 1), if he is suspecting a recurrence why is he waiting so long to excise/bx it? 2). Is a referral to an oncologist jumping the gun before a biopsy is done? 

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TexMelanomex's picture
Replies 11
Last reply 7/19/2018 - 12:24am

Hey Warriors!

Today I completed round 14 of Pembro and got results back on CT and MRI from yesterday. First, all scans were clear so I remain NED! (YES!!!). I'm still tolerating the Pembro well but my thyroid (TSH) has started to climb and fluctutate so I'm starting Synthroid tomorrow. I have noticed more fatigue and I'm hoping it helps get me back to full throttle. Anyone have any experience with this? TSH wasn't crazy high (and T3 and T4 were still in normal range) but I definitely felt more fatigue following these last few treatments.

I hope you are all kicking some melanoma ass and staying well engaged in the fight. 

Shout out to MelanomaMike who completed his third round of Ippy/Nivo today, NED or bust!

Warrior On!!

Tex

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