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.

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adriana cooper's picture
Replies 12
Last reply 4/3/2017 - 11:15pm

Crossing through the threshold to hospice care has been one of the most difficult and emotional experiences I have ever had.

On Friday, February 24, Adriana was re-admitted to the hospital only 10 days after her previous stay of a week, to try again to get her lower back and hip pain under control. Although she could walk and move about she was in great pain. On Monday she had day 11 of 14 of lumbar radiation and WBRT which she finished on Thursday as an inpatient. By Monday she had lost all strength in her right leg and by Wednesday she lost the use of both legs due to strength although she still had feeling in them. The loss of the use of her legs was exceptionally distressing for Adriana.  The plan early in the week was for her to go to a rehab facility in order to regain strength and learn to function using other methods at home including Hoyer lift and sling and slide board for transfers to the wheelchair and bedside commode. On Wednesday the Radiology Oncologist apologized and said the lumbar treatment didn't work as he had hoped. Her oncologist visited later and advised us to start home hospice care with a planned discharge on Saturday, March 4. He advised that she could resume taking the TAF/MEK that she had left at home but to not expect the same results (if any at all were to be had)  as she had experienced in October, when  first diagnosed with LMD, which completely resolved her pain within 5 days, as her “tumor load” is now significantly higher.

Although the social worker at the hospital as well as several others tried to reassure (me) us that hospice was the right path to take and that their significant knowledge of pain management and “comfort” (I hate that word and it's usage) would help us. We were quite skeptical (distressed) about what was to come. As much as we thought we we prepared for what this beast had in store for us we were not, and I was especially distraught. I could only see hospice as being there to help her die, and we were not ready for that yet. Knowing there really is no other treatment available, we still maintained hope in the BRAFi and planned on learning to live without the use of her legs as many others do every day due to car crashes and the like. The latter part of the week's stress was enhanced as Adriana was urged on several occasions by the attending doctors and hospice representative to complete a Physician Orders for Life-Sustaining Treatment (POLST) form (esentially  DNR/feeding tube/treatment desires in the event you code). She has also been  encouraged to change her choices by the hospice folks as her current choice to live isn't completely inline with hospice goals, creating a great deal of stress.

  During the early part of the week I purchased an adjustable bed frame for our mattress that we had purchased the prior week in hopes of allowing her something similar to the hospital bed so she could sleep. During the latter part of the week I scrambled to make plans and get supplies together to modify our living area (now reduced to a small bedroom, bathroom/laundry room with 36” stand up shower and. 25' hallway on the ground floor of the 4 level home that we live in.)  Items of relative urgency included moving the TV and cable to a wall mount in the bedroom to provide entertainment, building a plastic platform in the shower and ramp outside in order to easily move a rolling shower seat/bedside commode with occupant in for showering by one person, and modifying a sprayer attachment to the sink/toilet area to be able to clean the bedside commode in a sanitary manner as no one cares to have that next to their toothbrush or  where they shower. The most daunting was learning from the hospital OT/PT  and nursing staff how to safely transfer Adriana to the chair or commode without severely bruising my lovely wife or injuring myself. Also overwhelming for me was just the basics of toileting, cleaning and dressing. These are things you learn to do for yourself at a very young age and then relearn them for your children whom are significantly smaller than an adult. Most homes are not built ADA/wheelchair friendly and education for the tasks at hand are not taught in high school. No one ever thinks this is going to happen to them let alone plans for it. Care-giving is now redefined for me, although I am sure many of you have already achieved this level. With meds every 4 hours along with all of the other tasks including the chores of everyday living along with the fact that I am essentially her only caregiver, Saturday came and I was overwhelmed as I questioned if I could competently live up to the task. I only felt that I would miserably fail in my wife's time of  most need.

It was a pleasant day when we got home from the hospital and we went for a wheelchair walk down the block. Calm came to me as I realized we were home together with her pain under control, just as we had planned on the day that she went in to the hospital with the only difference being she can't walk right now. 

Well, it's been just over three weeks now and although getting up in the middle of the night for meds and toilet have been difficult, the daily routine is becoming a bit easier. Figuring out how we are going to pay our bills and get money for other needed home modifications along with regular living costs is a challenge, as I am now a full time caregiver, but we will get it figured out. Although hospice has provided some supplies and equipment we have found it necessary to purchase some of the (not inexpensive) equipment ourselves as it is more convenient for use in our home and  help maintain our independence. I know that hospice is here to help, but I am constantly reminded that it has to operate as a business. We have had to lobby for a specific (more expensive than the cheapest generic, but not name brand) brand of lidocaine patch as they work better. She is now being encouraged to switch off of oral delayed release Oxy (which is working well right now) in favor of fentanyl  patches due to cost. In addition, always in the back of my mind is that hospice's goal is not to prolong (or) shorten life, only to provide “comfort.” She is not done yet!!!

I have to say that one fear when starting hospice was that she would no longer have “medical care from those that we are used to” (did I mention I don’t like change) but the folks at Seattle Cancer Care Alliance have been here for us. The oncology nurse has called to check in, the anti-coagulation team has called about changing her blood thinner dosage as she had lost weight while in the hospital, and most especially the palliative care nurses have called me at least once every week and I have also called them with my concerns. Those ladies have truly been my lifeline in all of this.

About a week and a half ago Adriana was able to start moving her feet then her legs and as of right now she can kick me when she is sitting ;>)  pull her legs up toward her chest with effort and lift her hips with her legs slightly to help get her her pants on. We attribute this to her hard work and desire to live. We believe the TAF/MEK to be providing substantial albeit slow benefit. Her pain is most often at a 0 and she has mostly stopped taking Dilauded which was 4+ mg every 4 hours when she came home and are considering reducing her oxy. I have focused on making every effort to return to normal everyday environment and to live our life. We have been in the car, to the store and out to the waterfront beach that we enjoy with the dog. She has had a few setbacks, diarrhea over the last week has been a challenge.  We have been unsuccessful in defeating it with Imodium, pepto, and BRAT diet. She stopped BRAFi for 2 days (Fri-Sat) and thought on Sunday we might have it licked with no episodes (although no BM either) so she restarted BRAFi on Sun as pain resumed in her hip early Sunday morning. Adriana really believes the issue (in addition to nausea) is a side effect of the extensive lumbar radiation rather than the BRAFi as they have never been a problem before. I will post separately about the issue seeking advice as many might not read this far. I suggested that we stop the TAF/MEK again but she says no as she doesn't want the pain to return. Sadly also Adriana's dad passed away on Thursday and she could not be with her family in Ohio, we are thankful for Skype and Facebook to help us to be with them and they with us.

We continue  to live our lives, make memories and love one another and our families. We are grateful for all of you. We grieve with your losses and challenges and also feel the joy of your successes.

Best wishes to all.

Rob and Adriana

Adriana

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Replies by: TexMelanomex, Anonymous, Nick C, KimW

I'm back in Houston y'all! Nestled into my hotel room and prepping for tomorrow as the results from the SNLB are going to be life changing either way. First, I'm really excited about getting this "pincushion" removed from my scalp either way that's a win for tomorrow! Second, I'm excited/anxious...ok, even nervous because I get my SNLB results back tomorrow. I feel like I'm prepared for a Stage III if that's what the news brings but the reality of the treatments is probably bothering me most (the back and forth to Houston, the possible-side effects, time away from work, cost, drain on my fiancee, etc., etc.) but none of that even comes close to possibility of taking on and beating the hell out of this insidious disease. Hope outweighs costs every time I run the algorythym.

I know many, if not most of you, had this night, the night before node results. Some of you might have received results "out of the blue' from a phone call so there was perhaps less suspense. Not sure I would prefer that. I think getting the results in person tomorrow will work better for me because if they are good Dr. Ross is getting himself a great big man hug. If they aren't so good, he's going to get a lot of questions from me about the next steps and we put together the war plan.

I got to thinking about the collective amount of mental effort this group (and me included) that has expended worrying about the "what ifs". Its normal, its human, its what we do, but just imagine if that mental effort we expended on worrying about this bastard (my new name for it, and lower case b at that) was spent doing something productive, meaningful, loving, or relaxing? We'd all be better off for it. I suspect the worry will get the best of us at times, but we can fight it, at least give it the old college try.

So tonight, when I'd rather medicate myself with several stiff drinks and pass out (don't get me wrong, I'm not a big drinker, it just sounds better than worrying), I'm going to write some letters to people who have a special meaning in my life. Fortunatey, yet sadly, there aren't that many.

I think, no, I know that tomorrow when I wake up I'll feel much better and hopefully so will a few really important people in my life no matter what the day brings!

For the spiritual warriors out there...prayers are always appreciated and welcomed by me. Good vibes and happy thoughts are also cool :-)

Tex

Tex

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fem's picture
Replies 3
Last reply 3/28/2017 - 10:24am
Replies by: fem, Bobman

Hello,

I'm starting this by saying I know that my fears are anxiety-led and am seeing a therapist. These fears are driven by my Mom passing in Dec. 2016 from breast cancer.

I have a lot of moles, 200+.  I have had 7-8 biopsies over the years, and  two in January came back mildly atypical.  I know that is not a concern in itself, but I am now spiraling on DNS and FAMMM statistics.  My dermatolgist said that 'based on the way my moles look' I am at a high risk for melanoma.  Most are not big, probably 15-20 are 3-5mm with the rest small.  I also noticed a lot of new ones after being  pregnant (second daughter born Sept 2016).  Dermatologist didn't use the words DNS but she was getting my biopsy resutls from a different doctor who I wasn't a fan of and then we were going to make a treatment plan.  I'm guessing I have the syndrome.

 

Also my uncle has had 2 primaries but nobody else in my family that I know of. Some websites include this in the FAMMM definition.  

 

I'm just trying to figure out if my risk is say 30-50% (which my anxious mind could handle), or closer to the 100% reported for the FAMMM groups.  I know nobody can really give me an exact answer, and I will obviously talk to my derm more.

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Dachipmunk1's picture
Replies 2
Last reply 3/29/2017 - 5:03am

Original biopsy

this was taken 3 months after a full body check by a dermatologist, I pointed this red spot out, he said it was nothing, started to bleed 3 months later after removing my shirt

Skin, neck, surgical excision:
Melanocytic proliferation with overlying ulceration, see comment.

Surgical Final Comment

The ulceration makes further characterization of the nevus (compound or intradermal) impossible. Although no atypia is present within the sampled nevus, the proliferation does extend to the deep margin of excision. If this excision is part of a larger lesion or if the lesion recurs, re-excision may be considered if clinically relevant.

Second biopsy same spot

Skin, neck, wider surgical excision:
Skin with no significant pathologic abnormality.

The patient's previous pathology is noted and no residual nevus is identified.

 

 

 

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7amberk's picture
Replies 9
Last reply 3/29/2017 - 10:55am
Replies by: 7amberk, UBContributor, Anonymous

First post here. Decided to create an account after reading thru many threads on here. My mother was diagnosed with melanoma when I was very young. She passed away when I was 15 from the melanoma metasticizing to her lymph nodes and brain and lungs. I have had moles removed before and experienced anxiety but not like this. I am a new mom. My son is one year old. I am terrified. He needs his mommy around. I have a mole on my stomach and right breast that are worrisome. I have horrible health anxiety regarding cancer. I had the mole on my breast examined about 2 years ago and was told it was fine. That mole along with the one on my stomach have grown. I hadn't been concerned about them until now. Can moles stretch out during pregnancy ? And stay stretched out? I have convinced myself that there is no way they can be benign. The mole on my breast has a fried egg appearance. It is flat and the center is not raised. The center is darker brown and all around it is lighter brown. The mole on my stomach is brown but has grown in diameter. The center is a darker shade of brown. Does the stretching make them appear this way ? It also terrifies me that pregnancy is known to make melanoma go crazy. I have freckles and moles all over my body and I am certain I will get melanoma. It's not a matter of if but when in my mind. I am worried sick and cannot eat and am dreading my appointment and the wait for the biopsy results to come back. 

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JustJaren's picture
Replies 4
Last reply 3/28/2017 - 1:02pm

HI All,

In a sea of many that are suffering so greatly I actually feel bad for posting my miniscule worries, but this is a crowd that will understand.

After an SLNB in the groin and finding only '3 or 4' cancel cells (not enough to do BRAF testing) I am on watch and wait. Surgery was January 25th. 

While my recent trip to see the oncologist assured me that the remaining swelling in my groin is still normal after surgery, the last few days I have felt what can only be described as a small bruise, right above my pubic bone. 

In the shower last night I could almost convince myself that I felt the dreaded 'pea sized lump' but now today I do not feel it and I am having a hard time getitng the 'bruise pain' to resurface again, though my lump from the surgery (in the groin) has become noticeable, not painful. 

My question is this- I know there are DEEP lymph nodes close to the top of the pubic bones, but I don't think they would produce anything palpable. Has anynoe experienced an in-transit lump as a bruise like feeling?

As always, your candid and thoughtful responses are truly appreciated!

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Christine.P's picture
Replies 1
Last reply 3/27/2017 - 5:22pm
Replies by: newmanmark

For those of you who have had mets to the pancreas, did you have any symptoms that triggered suspicions or were they just found in your scans? Any info will be helpful. Thank you!

Christine P. 

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stevenallenschwartz's picture
Replies 13
Last reply 3/28/2017 - 8:46am

I just had my pet scan today after 5 infusions of Keytruda. Should hear within the next 24 hours where I stand regarding the efficacy of the treatment. Anxious but hopefuly!!!!

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Anonymous's picture
Replies 2
Last reply 3/28/2017 - 6:06am
Replies by: Anonymous, MaPerny

Hi,

Had three doses of ipi nivo but late Jan scan was only after 2 doses due to side effects.

Jan scan showed progression from liver only to skull, spine, pelvis, lung and various lymph nodes.

Have had radiotherapy following urgent mri to spine but no further treatment since liver labs spiked when dose 4 was due. Amwaiting for further pelvic radiotherapy.

Converstions with oncology team now seem to focus on dealing with pain.

Need second ct scan to confirm interval progression - probably this week- then conversation with oncologist, an assuming scan will show progression again as seems likely given pain... and extra info he has from spine MRI.

So question is what next..... onc does not seem keen to treat with more nivo-due to liver enzymes.

Am BRAF wild type so that side is out of the question. Team started tests for immunocore trial... but think steroid use puts a lid on that...

Til is not an option here....think am likely to be offered dacarbazine chemo or palliative care- 

Am guessing Keytruda/ pembrolizumab likely to fail if nivo failed.

Any advice / experience with treatment after failing combo very welcome. 

Desparately seeking answers...

 

 

 

 

 

 

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Coach337's picture
Replies 10
Last reply 4/18/2017 - 1:43pm

Diagnosed with IIIc Melanoma in November of 2015. 

 

Following several surgeries, the first treatment plan was Yervoy.  This wound up being scrapped as the first infusion came with a little bonus - an eight week bout of colitis that would knock my socks off multiple times each day.

 

Plan B was T-vec.  Received injections for three months with minimal side effects.  However, my first set of full scans showed that this treatment wasn't really accomplishing much - other than pissing the cancer off as it continued to grow and spread.

 

Third time's the charm.  I'm now approaching my sixth month of Keytruda infusions.  After the third month scans, I'm miraculously NED.  However, I'm not sure if it's a blessing or a curse.  There are a few of the regularly associated side-effects (fatigue, joint pain, headaches, muscle aches, feeling cold) but those are gladly acceptable considering I'm alive and kicking.

 

Here's the problem:  I've developed periodic crushing chest pain.  The frequency (several days in a row to once or twice a week), intensity (from 2-12 on a scale of 1-10), and duration (30 minutes to 24 hours) is always random.  When these episodes hit, I am powerless and completely shut down (in addition to being paralyzed by pain and anxiety).  I've had every cardiac and gastric test imaginable and check out fine.  The doctors can't really tell me what's going on.  I'm not sure if this is the Keytruda, a combinaton of the three types of treatments I've had, or something else alltogether.  It concerns me, because what should be the excitement of being declared NED is completely overshadowed by these episodes.  February and March have been extremely rough, and I often find myself wondering if I should be rooting for the cancer (or even speeding up the process myself) because there's no way I want to continue this.  Not just from a selfish standpoint either - it pains me to see what this is doing to my family and relatives.   Just curious if anyone has had a similar experience?

 

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Shaneswife's picture
Replies 3
Last reply 3/27/2017 - 10:24pm
Replies by: Charlie S, David McCaw

So found out Shane's insurance denied yervoy and we expect them to deny the keytruda as well. My insurance doesn't cover keytruda and still pending a decision on yervoy. Neither drug is funded in Ontario so it's not looking good for switching to immunotherapy. I guess he will have to stay on the braf and mek inhibitors even though he's only had a mixed response with progression to the combo.

Janis

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/30/2017 - 4:50am

Really hoping I can find help here.

My mom is diagnosed with Stage 1B, melanoma. Miotic rate 1mm. Breslow - 1 mm. Her primary tumor is on her face, near her right eyebrow /eye. She had a wide excision to remove it, then a biopsy on it. Biopsy came back positive and doctors said there is bit of left over tissue that needs to be removed. She is scheduled for another surgery next week. Her first surgery and the biopsy was about 2-3 weeks ago. 

She is complaining of her red eye being itchy now and looks like it's increasingly bothering her. Looks like there is slight swelling as well. This is reported information since she lives across the sea from me. I had her send me a picture, the eye otherwise seem fine to me. Nothing really to catch in the pics.

i asked her to go back to th doctor tomorrow to discuss. But I was wondering if anyone ever experienced this and has any guidance or advice. Thanks!

 

 

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ajpeterson's picture
Replies 1
Last reply 3/26/2017 - 6:27pm
Replies by: Anonymous

I have been recently diagnosed with melanoma in my lymph node in my groin.  I have had a PET scan and brain MRI that have both been clear.   I am not any meds related to the melanoma, but I was wondering if anyone else has experienced any symptoms like this related to the melanoma?  Or perhaps it's just anxiety.  

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snow white's picture
Replies 7
Last reply 3/28/2017 - 5:26am

Hi All- just wanted to update on Dad.  He has now completed his 3rd dose of IPI.  He will receive his last dose the middle of April. I received an email from his doc and she said they will rescan after his last dose and then decide where to go from there, most likely Keytruda.  So far for side effects he is very fatigued although he continues on his daily rountine, working in the yard, grocery shopping etc.  His sleep has been up and down, one night 10 hours the next 4-5.  We have also noticed that he is very grouchy, doesn't want to be bothered.  I COMPLETELY understand this having gone through 18 chemo treatments, I disliked everyone by the end.  We are having his labs drawn to keep an eye on the pituitary etc.  Doc. says at this point that we are in pretty good shape, of course that could change at any moment.  Sending positive vibes and virtual hugs to all of you out there fighting and also to the caregivers that go through so much.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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Anonymous's picture
Replies 5
Last reply 3/26/2017 - 8:42pm
Replies by: Anonymous, Bubbles, Ed Williams

I am a Phase I clinical trial participant with a BRAF V600K mutation at the University of Michigan involving a combination trial between Dabrafineb, Trametineb, and GSK2141795.  I am one of four out of eleven patients whose metastatic melanoma has stabilized at U of M during this trial.  GSK2141795 is owned by Novartis, but was manufactured by GlaxoSmithKline.  

Novartis refuses to manufacture any more GSK2141795 and we run out of meds on April 30.  

Does anyone have any extra GSK2141795?  Or know any details regarding the sale of GSK's oncological division to Novartis in 2014?

Novartis included the information regarding GSK2141795's unavailability in the trial paperwork we all signed, but it came along with a verbal promise that another drug was under development and would be ready to take its place.  It's not ready and they don't want to manufacture any more of it.

This is such an emotional rollercoaster; I run from being grateful for having a few extra months to live, to feeling really angry that a drug company knows how to solve this issue, but refuses to do it.  I was hospitalized for 6 days with allergic reactions and risked blindness three times with dosage adjustments to prove out this drug.  Now it's working and there isn't any more of it.

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