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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VinceMart's picture
Replies 16
Last reply 9/28/2018 - 1:25pm

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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MelanomaMike's picture
Replies 12
Last reply 9/28/2018 - 1:20am

Ill have to type it out myself, for i dont know how you guys "link" it or whatever, here it goes!

The visualized portions of skull base:Unremarkable, visualized orbits are within normal limits..
There is moderate paranasal sinus mucosal disease wich has mildly worsened. Nasopharynx oropharynx, hypopharynx and larynx are remarkable.
Mildly prominent bilateral neck lymph nodes are not significantly changed.
The parotid and submadibular glands are within normal limits.
Thyroid gland in unremarkable.
The osseous structures of neck demonstrate degenerative changes of the spine.
The heart & great vessels demonstrate calcification consistent with atherosclerotic vascular disease.
Prominent to enlarged mediastinal and hilar Lymphnodes have all mildly increased in size. The largest Lymphnode is a subcarinal Lymphnode which has increased in size from 12mm to 14mm.
The posterior right lower lobe lung mass has increased in size from 2.2CM to 5.2cm (from last scan in May 2018!! Booo!) A previously seen left lower lobe lung nodule has "Decreased" in size ftom 2.5cm to o.9cm (yaaay!!). Other scattered small subcentimeter nodular densities are not significantly changed (Yaaay!). Liver has no focal lesion or biliary duct dilatation.
Gallblader is unremarkable
Spleen is normal.
Pancreas is without focal lesions.
Adrenal glands unremarkable.
A small renal cyst is again seen. No stones are identified. There is no hydronephrosis.
Bowel demonstrates no evidence of obstruction.
Pelvis, Bladder, unremarkable.
Prostate within normal size.
The osseous structures demonstrate degenerative changes of the spine.
Ok! And the end it reads "Impression" wich is everything i wrote anyways just condensed it seems, i shoulda just copied that haha..
My last CT Scan was 4/24/18 in comparison...

Im Melanoma and my host is Mike..

www.covvha.net

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 To all warriors,

      My husband Bill has had stage 4 acral lentiginous melanoma for over 5 years. His treatments have been vats surgery, TIL at NIH, ipi/ nivo trial, vats surgery, nivo alone, vats surgery and for the last almost three years a her-2 drug after Sloan Kettering discovered he had a high expression of the mutation. He just had scans last Monday and after being stable since the start of the drug he has two new lung nodules in the right lung that has had 3 vats surgeries!!! It’s so damn frustrating!!! They will do a biopsy this week so Sloan Kettering can do an analysis again. Because his platelets are around 85 for the last three months and his liver numbers are very high, we are extremely concerned about doing another her-2 drug combination that includes chemo. SOLE suggested cryotherapy and we’re seriously considering it. We live in the Washington DC area, but are very willing to travel if necessary. My husband feels great and in fact is playing 18 holes of golf today. Any advice is very welcome!! Thanks so much!!

Maureen

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Hukill's picture
Replies 5
Last reply 9/27/2018 - 4:54pm

I had 5 doses of ipi and 52 doses of nivo. My last nivo was 08/03/2018. The drug should of been out of my system around 09/01/2018. The last several weeks I have been having headaches, severe hot flashes from the neck up, my rash which I have had since 07/2016 but never itched is now beginning to itch but only one spot at a time. Has anyone else experience what maybe considered withdraw symptoms from nivo? I see my dr next week for my first scans after stopping nivo.

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jessica_f's picture
Replies 10
Last reply 9/27/2018 - 2:18pm

Hi everyone,

I don't usually post, I'm more of a reader but I've run into an issue with my scan results. I'm a stage IV patient, dx initially in 2001 as a stage III. I had lung mets in 2015 which were resected and I followed up with 3 ipi infusions (never made it through my fourth as I developed colitis).

I've beeen NED since Jan 16 but went to my onc last week with some troubling issues - confusion, problems with my short-term memory, numbness in both arms from my elbow down into my pinky and ring fingers. I have back pain all the way from my mid-back down to my lumbar region and my body twitches on occasion. 

My onc sent me to the ER to get an MRI because it would be the fastest way to get results. The good news is that my brain looks fine. The bad news is that my spine has multiple lesions (looks like at least 6). My oncologist doesn't think that the lesions are melanoma - she's suggesting congenital or trauma. But I'm a little leery of her conclusion. From 2013 to 2015 we watched my metastatic lung nodes grow slowly, during which time she was convinced that they were benign granulomas.

I really love my onc and have been with her for nearly 20 years; she has the best bedside manner of anyone in the business. But her strategy is to be non-alarmist and I fear that she's holding back on me until we have further evidence of growth. I had a CT of my chest, abdomen and pelvis last week and all was clear. I'm at NYU and thinking of getting a second opinion at Sloan re: my spine; any thoughts from the board would be appreciated.

Best,

Jessica

Study Result

IMPRESSION:

Slight interval increase in size of an enhancing, sclerotic subcentimeter lesion within the T1 vertebral body, suspicious for metastatic disease.
Additional 5 mm T7 superior endplate enhancing lesion, not definitively seen on the prior study, suspicious for metastasis.
Additional small enhancing lesions within L1 and L3 vertebrae may represent additional foci of metastatic disease.
Multiple other indeterminate vertebral body lesions as described above.
No evidence of cord compression or epidural extension of neoplasm.
Narrative
Clinical history: Metastatic melanoma, presenting with right upper extremity radiculopathy and 2-4 weeks of confusion

Technique: MRI examination of the entire spine was performed prior to and following administration of 5 cc Gadavist intravenous contrast.

Comparison: MRI of the cervicothoracic spine from 12/9/2015. Comparison is made to multiple CT examinations of the chest, most recent from 7/13/2017

Findings:
Alignment throughout the cervical, thoracic and lumbar spine is maintained without evidence of listhesis. Vertebral body heights are preserved without evidence of acute compression deformity.

There is a 9 x 8 mm homogeneously T1 hypointense, heterogeneously T2/STIR hyperintense, predominantly peripherally enhancing lesion within the T1 vertebral body. This lesion appears sclerotic on multiple prior chest CTs. Compared to the prior MRI given differences in technique, it appears slightly larger, previously measuring possibly 6 x 5 mm.

There is additionally a 5 mm T1 hypointense, T2/STIR hyperintense enhancing lesion within the T7 superior endplate. It was not definitely seen on the prior examination.

There is redemonstration of a T1/T2 hypointense, well-circumscribed sclerotic lesion within the left aspect of the C7 vertebral body, unchanged from prior examinations, and likely representative of a bone island. No associated enhancement is seen.

Unchanged from the prior MRI is a nonspecific 7 mm STIR hyperintense lesion within the right facet of T2.

There is an indeterminate, peripherally STIR hyperintense/enhancing lesion within the right T4 facet is noted.

There is a 7 mm T1 hypointense, STIR hyperintense enhancing lesion within the L1 vertebral body. Additional questionable STIR hyperintense, possibly enhancing lesion measuring 6 mm within the L3 vertebral body.

Evaluation of the cervical spine demonstrates no significant disc herniation, cord compression or neural foraminal narrowing.

There are scattered mild degenerative changes throughout the thoracic spine. Visualized on sagittal images only, there is a right central disc herniation at T7-8 which appears to contact the ventral cord, with mild resultant canal stenosis.

Evaluation of the lumbar spine on sagittal images demonstrates no large disc herniation, significant canal or neural foraminal stenosis.

There is no signal abnormality identified within the spinal cord. No abnormal cord or intrathecal enhancement is seen. The conus medullaris terminates at the superior L2 level and is unremarkable in appearance.

DX Stage III, 2001, WAE + lymph node excision; 1 year interferon high/low dose...Stage IV, 2015, lung resection, 6 months Yervoy; currently NED

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Ridingaroundwith27Jennifers's picture
Replies 13
Last reply 9/27/2018 - 2:05pm

Hi All,

I have my routine brain MRI scheduled for Monday.  I've started calling it "Brain Day".  I schedule my neuro appointments after the scan and take the day out of work.  I try not to stress and bring a good book and just hang out on Fenwood and Francis streets and then bounce over to good old Brookline Ave.  My boss has started rejecting my vacation days for Brain Day and just let's me take the day.

For those of you in the midst of the darkness remember there is light.  Things get better.  You heal.  You persevere.  You survive.  Chin up if you can.  Use humor.  Draw strength from others.  

Good wishes to you,

Jennifer

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MelanomaMike's picture
Replies 14
Last reply 9/27/2018 - 1:25pm

Thanks to our fellow sister khubes (Katie) i finaly made a decision to see Kaiser down there off Sunset, iv been "eye balling" them for awhile & when she posted her idea of it (on behalf of her husband who is the patient) i got a different referal & its set for Oct 1st! Ill see Dr. Rodriguez who is also treating her hubby so, he "sounds" promising...ill keep you all posted afterwards...thanks again for all your support...now enough of me! Lets reach out to You! Especially you Newbies & terrified Stage 1'rs...

Im Melanoma and my host is Mike..

www.covvha.net

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Anonymous's picture
Anonymous
Replies 6
Last reply 9/27/2018 - 12:38pm

I have not posted any updates in a while so here it is... I am official 10 treatments in (treatments every two weeks) So far the treatment side effects have been pretty mild. I have lost the thyroid which was no surprise since my doctor had warned me that is was a possibility. The fatigue has been overwhelming at times but I have been working full time and still full time momming to a 6 & 9 year old. So for those that have asked if it is possible to keep working and keep doing the thing you love to do the answer is a big YES!! Some days you may need that extra nap or bed at 7pm but you can do it!! I have now had my second set of scans since starting Nivo and last scans showed NO cancer!! I have really had to take a deep breath and process that....I guess because I know how tricky this cancer can be. But today I am going to enjoy every moment....the best lesson I have learned in this journey!! I still have 8 months of treatment ahead of me but so thankful for treatment options. I lost my grandfather to melanoma 24 years ago and I know how lucky we are now to have all these treatment options. 

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RichInLife2's picture
Replies 2
Last reply 9/27/2018 - 11:36am
Replies by: RichInLife2, bjeans

Hey, anyone know how to contact MRF support for an problem I'm having with my account? I've searched around on the website but I can't find it anywhere. Thanks.

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Olytown's picture
Replies 8
Last reply 9/27/2018 - 11:27am

I'm a stage III melanoma survivor and following surgery 2 years ago, I have had good body and CT scans. I used to be very active outdoors : running, hiking, kayaking, swimming, body surfing, etc.  I've become afraid to even go from the house to the car to go to the store. I do follow the advice of my oncologist to choose outdoor activities during times that my shadow is longer than me. I cover up with UPF clothing more than relying on sunscreen and I even wear UPF gloves.  I have become somewhat outdoor-phobic though, and it is limiting my previously active lifestyle. Sometimes I get depressed about it. When does it feel safe to be outside again? I have turned down some fun invitations due to fear. 

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Tracyyy's picture
Replies 3
Last reply 9/27/2018 - 8:06am
Replies by: Tracyyy, jrtufo

Hi friends,

I haven't posted in a while but decided to give you an update about my mother's situation. As most of you know she is Stage 3C unresectable with pelvic lymph nodes involved and in March 2018 she started a double blinded trial Dab/Tram + PDR001 (immunotherapy) or Dab/Tram + Placebo. First scans in June showed that the nodes have significantly decreased in size, but then in July the side effects started - high fevers, sweating, chills, nausea, rash, etc. She was off the drugs couple of times, in August the oncologist reduced the dose of Dab/Tram and now she is doing well. The scans in August showed that the nodes are stable - they haven't decreased, but they haven't got bigger too. The scan also showed that my mother has lung inflammation - pneumonitits. The oncologist told us that this not a side effect of the targeted therapy and that is why they think that the infusions she gets together with the targeted therapy is immunotherapy, because pneumonitis is a well-known side effect of it. They prescribed her some steroids and antibiotics and the inflammation is almost gone. Did any of you get pneumonitis while on immunotherapy? I know that stable is good response, but I want so much for her to be already NED! Best wishes! Xxx
 

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Elizabeth123's picture
Replies 11
Last reply 9/27/2018 - 5:31am

Hello all. 

I posted a while back,  my husband is stage 4 with a lot of brain mets, some also in the lungs and adrenal glands.   Wondering if any of you have been through this.  Last year we did gamma knife on a number of brain mets in combination with target therapy.   Things we ok on the one they treated,  but met new ones kept cropping up.  In April of this year we under went whole brain radiation and began immunothearpy.  Single agent pd1 keytruda.   At the end of June the MRI revealed 30 brain mets had progressed.  It seems alot of them doubled in size.  And then the brain swelling started.   So they put us on 16 mg of dexamethasone and decided to do Srs to 11 of the mets.   Every time we try and taper down the steroids the brain swells.  Recently we also decided to add in low dose ipi.  To our mix.  And again. As soon as I get to 8 mg of dexamethasone the brain swells and a whole bunch of mobility issues happen.  The doctor said today that we are in a heartbreaking situation,   If this combo doesn't work.  There is nothing much else.  He says we need to get off the steroids.  Anyone have any advise.  Anything else we could try.  

You all are so  helpful and encouraging,  looking for any advise   

Liz 

 

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Dave61184's picture
Replies 7
Last reply 9/26/2018 - 6:31pm

Hello everyone prayers for all.  As I stated in previous post I was diagnosed with stage 1a and had it removed this past July. The individual that did my wle was a dermatologist that was specialist in Mohs Surgery he seem very confident and said after this wle I’m good. At that time I was worried and rushed into the wle and didn’t even do any research. I’m now  doing research and others people told me that I should have gotten a melanoma specialist/melanoma oncologist first and reviewed it with them and had them remove it. Now I feel that I made a bad decision. I’m now seaking an oncologist/melanoma specialist to review everything. Now I’m just worried that I did this in July it is to late and it won’t benefit me cause I don’t know what they can do.  I want to be proactive and don’t want it to spread. Has anyone just had a dermatologist do the  Wle? Thanks again everyone.

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Savymoo23's picture
Replies 4
Last reply 9/26/2018 - 12:57pm

Hey everyone, 

I've been gone for just a little bit. I needed to get my head clear and spend some time trying to get my head straight. I'm on like three different meds for anxiety and depression and I feel like a basket case. I think I need to spend some more time outside while I can before the snow starts invading our life. My dad gets married next week in Nashville, so I'm glad I get to get away from my kids a little bit and spend some time with my family who I never see anymore. (My whole family is from San Diego, CA and I now live in Boise, ID). 
I've been trying to let Melanoma sit on the back burner just a little bit so that I can maybe live my life a little bit. I think it's time to get my body back to a healthy weight and just enjoy my life. I do have this dome over me that it'll pop up whenever it would like again. And that thought it just scary.

 

Anyways, this is just the most random post. I miss you guys. I've been thinking about all of you and your treatments. I will continue to pop in and update y'all on my random life. Much love!!!

Savannah Price

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estelle's picture
Replies 2
Last reply 9/25/2018 - 10:55pm
Replies by: doragsda, Janner

I am 71 years old and have just been diagnosed with my first melanoma. I've had a basal and a squamous cell cancer removed in the past (due to lots of sun damage in my early years), but this is the first time I've been told I have a melanoma. It's a small spot on my thigh -- one of umpteen on my legs and arms -- that my previous dermatologist has passed over for who knows how many years. But I changed dermatologists and my new one thought it looked suspicious (even though to my eye it looked just like all the others), had it biopsied and it came back as Stage 0, in situ melanoma. It took two weeks for the biopsy report to come back and now I face a dilemma because I have a trip-of-a-lifetime cruise to Antarctica (OMG -- think hole in the ozone!!!) planned for the end of October, and there is barely any time to have the surgery needed to remove the melanoma with wide margins, and to have stitches removed before we leave. I have no idea how big an incision this will end of being or how long it will take to heal. The surgeon I saw on Friday said it could wait until we get back from our trip, but that won't be until the end of November. Dare I put this off for two more months? As of now, the surgery is scheduled for December 4. Am I risking having a Stage 0 tumor turn into something more dire and invasive? I am also terrified that I have more of these melanomas that have gone undiagnosed due to the inattention of my previous dermatologist. Where does one find a dermatologist to give me a really thorough exam, given my history, and how in the heck do I personally keep track of 20 or 30 different spots that might or might not be changing in tiny increments from month to month? The more I read about this, the more terrified I become.

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