MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Dwarla's picture
Replies 0

I saw my oncologist and she is almost positive that I'm allergic to Yervoy. I've had 2 treatments and 4 days after the second one my lips, tongue, and face swelled. After a trip to the ER, I've been on benedryl around the clock. I'm still having swelling episodes 2 weeks later. Opdivo only from here on out. Hopefully what I've had will shrink my lymph nodes.

On a positive note.......

My mouth is in much better shape after using coconut oil suggested by Gene_S. Thank you!

...my husband and I are going to a MLB game! First get away we've had in several years! We're excited. I'm not having a treatment until after we get back! Yay!!! 

Dwarla

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jagstter's picture
Replies 8
Last reply 6/19/2018 - 8:54pm

Labs, Full CT & Brain MRI on the menu for today. Meet w/ the Team, tomorrow to discuss known (kidney tumor) & unknown. Hoping nothing else turns up, though I've had a 1" hard lump behind my left nipple, since the beginning of May & am still recovering from prostate surgery, early April. That recovery has been surprisingly difficult, even though I'm now 9 weeks out. I'm pretty sure I've developed another UTI (ugh!) but the doctors here were kind enough to order a urinalysis & save me from waitning another 2 weeks, before my appointment w/ the urologist back home.

Per Celeste, I'll definitely push for a neoadjuvant approach, especially if any vagary exists about the exact nature (RCC or Mel?) of the kidney tumor ... it's at least worth a try & may stave off surgery, at least for a while. Like most of you, I'm sure, I've had more than enough of that ;-)

Anyone in town? If so, it would be great to connect. Please, let me know & take care, everyone!

 

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sister of patient's picture
Replies 13
Last reply 6/15/2018 - 12:51am

Hey all,

Good news up here - my sister Leisa is scheduled to conclude 2 years of immunotherapy with last infusion on June 22. She's a bit nervous about it but I'm so happy for her!!

She's right on the "sweet spot" as far as timing is concerned too (from my understanding of it), two years of immuno in total and NED for the last year. 

So, a couple of things in case the info is of use to anyone:

She began a steroid taper again about 4 weeks ago and that'll take another 12 weeks, as the reduction this time is very slow. Onc also warned that she may be in for endocrine system problems so we'll be on the lookout for any issues there and, frankly, 2 1/2 years of steroids have taken a huge toll (you just look at her and she bruises - every time she has a different nurse in the chemo suite and they see her arms they question her as to whether or not she's being abused.) The onc says it'll take some time but her skin will thicken up again and return to normal.

She's had several side effects involving inflamation (uveitis, suspected pneumonitis and myocarditis) but , other than the uveitis, her onc could not tie it to nivo - so many instances that we jokingly refer to them now, collectively, as "nivo-itis" but some of these have been very scary so this is why I'm glad treatment is finishing.

She also has vitiligo head to toe - I had wondered about this but, when her hair and eyelashes grew back after WBR, we had assumed that the radiation had caused it to turn white but onc confirmed today that it was the ipi (had two combo infusions before WBR and then nivo only thereafter.)

Also, I mentioned before that my sister had asked for and was prescribed Ritalin - this was not long after WBR and it was specifically given to combat the weakness and fatigue it leaves. She stayed on it for a year, took herself off and then, wham!! - experienced nivo fatigue for the first time, which has stayed with her, so another great reason treatment's ending. For those experiencing such fatigue though, it may be worth asking for Ritalin.

A quick word about her nivo dosage: under the trial she was in, the nivo infusion was the 1 mg. per kg. with the combo but her nivo only has not been the 240 mg. - it has been a steady 3 mg. per kg. Prior to weight gain with steroids, she would've been under the 240 but that didn't last long and for (about) the last 16 or 17 mos., her dosage has exceeded 240 mg.

And, maybe of importance to anyone here in Canada, for the last year of treatment, we were kind of in the dark as to who or what program was paying for treatment (she started under clinical trial but it was only a year long) - we thought it was some sort of "arm" of BMS paying for her treatment (because they had interviewed her when the trial concluded) but, lo and behold, it was our good old OHIP system here in Ontario that paid. 

As for a plan in the event of recurrence, onc says she'd probably look for another trial but that taf/mek and immuno would all be available to her (not the case if she had failed on them though but she never did - responded to everything).

One thing I want to ask about here is: onc wants her to concentrate on skin checks because she stated that her (my sister's) odds of developing a new primary were still much higher than the general population. I thought it was only about a 10% chance >> is that not right (I'm sure I got that info here)???? Naturally, she'll be seeing her derm regularly anyway but I want her to be on the lookout for intransits, given the number of them she had previously.

Last thing, I've stated it here before but it's worth repeating - immunotherapy has done the total job for my sister, there was no surgery after CLND (if we added all organ, bone mets and intransits, the tumour burden would've actually been well over 100 - and that does not include the hundreds of micro brain mets or the larger ones, 3 of which were bleeders). She's had a pretty rough ride - WBR is no picnic and mel has left her with permanent damage - BUT she has her life back and I still have my sister. :)

Take care everyone and most importantly, don't lose hope!!!! Cheers!

Barb

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Boo79's picture
Replies 3
Last reply 6/12/2018 - 4:40pm
Replies by: Janner, Anonymous

I received this pathology report today  I've had several reports from several miles being removed. I've never had any say this, so could someone explain this to me? Thanks.

CLINICAL INFORMATION: R/O melanoma.

OPERATION: 1) R breast. 2) back.

(Clinical Information and Operation obtained from the Requisition submitted
with specimen)

DIAGNOSIS:
A. Skin, right breast:
- Case was sent out for a consultation, will be reported as an addendum.

B. Skin, back:
- Case was sent out for a consultation, will be reported as an addendum.

GROSS PATHOLOGY: A. R breast – received in formalin and consists of a
skin shave, 0.5 cm in greatest dimension. Bisected and submitted entirely
in A1.
B. Back – received in formalin and consists of a skin shave, 0.6 cm in
greatest dimension. Bisected and submitted entirely in B1. RS:rh

MICROSCOPIC PATHOLOGY: A. Sections of the right breast skin biopsy show
irritated benign seborrheic keratosis.
Part B, the back skin lesion shows compound nevus with tissue
acquisition artifact present at the biopsy margin. Melan-A and SOX-10
stains show focal melanocytes within the epidermis. Control sections react
appropriately. KK: mb

88305 x2, 88342 x1, 88341 x1

 

 

ADDENDUM: This case was referred to ARUP for consultation and their
diagnosis reads as follows:
A. Skin, right breast, shave biopsy: Favor compound melanocytic nevus (see
comment).
B. Compound melanocytic nevus.

COMMENTS:
A. Focal melanocytic nests are seen along the dermal-epidermal junction and
within the dermis and extend to biopsy edges. I assume this specimen is
representative of the entire clinical lesion. If a clinical lesion
persists/recurs, a complete sampling would be advised for definitive
diagnostic purposes.

 

 

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Rncab218's picture
Replies 7
Last reply 6/15/2018 - 8:21pm

Hi,

It has been a long time since I was on this site.  WhenI was first diagnosed in May 2009, I was a daily visitor and received so much support here.  I was diagnosed stage 3, no known primary,two positive lymph nodes, wide excision done and 10 months of Leukine.  I was followed closley with scans for five years and last month a nodule appeared close to where others were (left forearm) and was positive for melanoma.  Had a wide excision today and meeting with oncologist at MSK tomorrow to discuss adjuvent treatment with PD1.  Surgeon told me I am eligible for this treatment but not sure if side effects warrant the use as I was NED for nine years and have one positive nodule, PET scan and CT of lung both negative.  Any information or thought would be much appreciated as I cannot decide wheich way to go.  I read so many negatic side effects but don't want to advance to stage 4 and wish I had done somthing to prevent it.

Thanks,

Cindy

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Anonymous's picture
Replies 2
Last reply 6/21/2018 - 2:43pm
Replies by: jrtufo, BillB

I have already had a Wide excision and lymph node biopsy. They found it had metastasized in paratoid gland ,so need to have another surgery.,but my surgeon has refered me to another surgeon that specailizes in breast cancer and plastic surgery. I don't know what to do? Drive 3 hours to surgeon who specializes in melanoma or go to local plastic sur?? Please advise!! Thank you

Susan Bette Hall

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aldrichdesigner's picture
Replies 6
Last reply 6/16/2018 - 9:02pm

I don't know about everyone else but ever since keytruda doses started; I seem to sweat like crazy no matter what time it is. The worst is in bed though, I will wake up in puddles around my neck and my waist area. And sometimes I can even feel it coming on sort of like when your going to get a fever.
It's really annoying and I dont know if this is something every one on keytruda/pembro is experiencing or if it's just me? I don't see it listed on the list of side effects.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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dessie's picture
Replies 2
Last reply 6/12/2018 - 6:42pm
Replies by: kcmtnbiker, ed williams

Surfing around and found this:   AimatMelanoma Website  Answers a lot of questions I think

 

 https://www.youtube.com/playlist?list=PLOnM_erAQqIALxN78PHZ9D3SGkIoR0QgV

 

copy and past I guess and hope it works

Dessie

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Fighter_JSS's picture
Replies 1
Last reply 6/9/2018 - 7:34pm
Replies by: Anonymous

I have been on Taf/mek combo for just over a month. Stage 3a melanoma that was resectable. Original scans were clean. At my first follow up since the pills I had my lab work done and set up for a EKG but when I asked about having scans I was told because I wasn't metastatic that they wouldn't do any ct, pet or mris again unless I show symptoms of a problem...my oncologist said if I was interferon they wouldn't be doing scans either. He said they don't like to as there can be false positives. Does this sound right. I could've sworn they said every three months and ultrasounds of under my arm where the one lymph node affected was found but no mention of that either. This seems reckless but I don't know. Again a second derm I've seen has tried booking me for a year from now when in office she said every three months as well. I'll be pushing back on that tho because in the booklet for taf/mek it says skin checks every two months. And these are highly recommended people here in Ontario.

Stage 3a Braf+ new fighter

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MelanomaMike's picture
Replies 4
Last reply 6/13/2018 - 9:58am

Hi Family, hope yer all doing good & maintaining yer treatments with tolerable side effects cuz God only knows when their bad their freaking bad!
But anyways, my last infusion was canceled due to extremely low ACTH at 1.0 and im gathering it should be a lot higher for us humans like in the 40's 60's..(we all are unique) so, now im learning this has everything to do with adrenal glands/cortisol secretions & a whole slue of componants related. Explains my week & a half of no eating, (no appetite) weekness fatigue (extreme) and so forth. So, iv been prescribed Hydrocortisone (steroid) so, lets see what happens, first my Thyroid now this, its all good. I eas also prescribed my very own Megace! Wich is a god send, those of you who have followed my posts lately know why its god to me haha...
So Ipi/nivo #2 is set for June 15th. I have a MRI (head) this coming Monday 6/11 wich some pf you i cant stand scans (except CT scans, there a piece of cake) i have claustrophobia and take plenty of Adivans haha...well folks, have a good weekend and youll hear from me soon like after scan results...love ya...Mike

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khimes's picture
Replies 7
Last reply 6/13/2018 - 6:26pm

I just got word to what my Opdivo treatment is going to cost after 2 infusions ...

73,000.00 per session this is approaching 1 million if you include scans etc.  Everything I have read says the cost for total treatment should be150,000 or so.  Does anyone have an idea on what i should expect for other treatment centers?  I am currently getting Opdivo 1 time every 4 weeks at Goshen Center fo Cancer Care, Indiana.

 

I have good Insurance, but the plan is mostly self insured and this will potentially affect the companies ability to continue benefits at current levels.

 

Thanks and wishing you all the best with this battle.

 

 

 

 

 

Ken

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tedtell1's picture
Replies 13
Last reply 6/11/2018 - 9:40pm

Hi everybody;

About a month ago started to develop some discomfort in my belly. Has been getting progressively worse. A week later I started 100MG of prednisone (no nasty side effects except for keeping my appetite when  I am uncomfortable eating). Now tapered to 40 MG. Last week saw onco, got me scheduled for dreaded colonoscopy which was today. Colonoscopy was essentially normal, no signs of colitis...or anything to really cause the problems/pain. Now tonight, pain is worse, really uncomfortable and nothing has really worked. I have another Opdivo treatment (monthly now) a week from Monday. Getting pretty uncomfortable and worried. Any thoughts experiences? 

Thanks,

Ted

Ted Tellman

Stage IV initial, currently on Nivo 1x per month. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

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Bubbles's picture
Replies 1
Last reply 6/11/2018 - 8:12pm
Replies by: bjeans

So there is this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-survival-of-melanoma-brain.html   Not surprisingly immunotherapy worked on melanoma brain mets.  But the presentation does give a pretty good over view of how times have changed in melanoma treatment.

And there's this:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-nivo-vs-ipi-as-adjuvant-in.html  Nothing too earth shattering here, either.  Yep.  Nivo does better than ipi as an adjuvant treatment (folks who have had their melanoma tumors removed) in Stage III and Stage IV patients of all stripes.  Stage III patients were disease free longer/more often than Stage IV on both drugs.  BRAF status made no difference.  And probably most important for melanoma world currently ~ while those with a higher PD-L1 expression did a bit better...folks with lower levels of expression STILL RESPONDED!!!!!

For what it's worth.  Happy Friday.  Celeste

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Coach2u's picture
Replies 12
Last reply 6/12/2018 - 1:31am

I am stage 4 with tumors on liver and one on spine at t-12. Keydruda did not work after 4 treatments. Switched to Yervoy and Opdivo and just had second infusion last Monday. So far no side effects. According to Doc side effects are an indicator that the stuff is working so now I am concerned this is not working either.  Has anyone had success with these drugs and not had a lot of side effects?

i had a second opinion and that doctor said to consider radiation or spine but my doc says not a good idea at this time. Radiation kills the spot but does not allow for other options later like surgery. Any thoughts out there. Also second opinion said get MRI of spine and my doc said just got CT and MRI will not offer any new info. Therapy would be the same. So plan is to continue therapy for the 4 infusions and then get CT. It the waiting and wondering that is the hardest. So conflicted I want to do everything to get rid of this and live a little longer.

i was only 5% positive for PDL-1 so that is one reason he said Keydruda might not have worked. Sure hope this new stuff does.  MIke K.

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Anonymous's picture
Anonymous
Replies 4
Last reply 6/9/2018 - 2:27pm

i was diagnosed with stage 2 b in March of 2014.  I had wide excision surgery with a sentinel lymph biopsy.  My melanoma had not spread to the lymph nodes. I continued with full body checks every 3 months until two tumors close to the primary were found in my leg in May 2017. I was diagnosed with Stage 4 melanoma.  It had spread to the lungs.  I have been on Keytruda since Aug. 2017 and doing well. The tumors in the leg have been shrinking and only 1 tumor remains in the lung.  Luckily it has not gotten bigger.  My understanding is Keytruda only works in 40% of patients.  So my questions are:

 

1.   If it stops working when has it stopped working?

2.   If you can with stand the side effects and are seeing progress how long do you stay on keytruda?

3.   If you go off keytruda and the cancer returns do you go back on keytruda?

4.  What is the life expectancy for stage 4 patients.

My oncologist doesen't seem to want to answer these questions.  I just feel like I am going thru this blindly.  Any input from those that have been thru this would be greatly appreciated.  I think the not knowing cause more anxiety than knowing what to expect.

 

Thanks 

 

 

 

 

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