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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jennunicorn's picture
Replies 9
Last reply 7/20/2017 - 7:22pm

Since being told my TSH number was high 2 weeks ago, meaning my thyroid is underactive, I have noticed that I am getting a lot more fatigued than usual. Mostly in a weird foggy brain, feeling off, not quite myself, tired way. For those who have also experienced hypothyroidism, does this sound similar?

I will see the nurse practitioner tomorrow before my infusion since my oncologist is on vacation this week, and will let her know all of this. It usually takes until the end of the day to get the TSH blood test back, so I won't know if it's gotten worse until tomorrow evening. 

When others have started on Synthroid (levothyroxine), how long did it take before you felt more normal again? I am in the process of interviewing for a new job, I have my second interview on Friday, and if I get this job I really need to be back to more normal energy levels, so I'm stressing a little bit about this if you can't tell. 

 

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

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The previous post was mine, I forgot to un-check the Anonymous box ,so sorry for posting as anonymous,

Teodora Chasse

T.Chasse

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Anonymous's picture
Replies 2
Last reply 7/19/2017 - 2:34pm
Replies by: adrianc, Cindyco

So yesterday I met with Dr.Stephen Hodi and his team at Dana Farber. We discussed treatment options for stage 2 and 3 mucosal melanoma patients. In short, he confirmed that surgical resection is the best initial course  of action for this type of cancer when applicable  . Interferon and Yervoy / also radiation/ are the current options for adjuvant therapy for resected mucosal melanoma for stage 2 and 3 .However he said no one can predict if they can work or not on mucosal melanoma as these drugs were developed for  cutaneous melanoma .Dr.Hodi  gave me a printout of a clinical trial conducted recently in China for patients with resected  mucosal melanoma  stage 2 and 3 with a chemotherapy drug  that showed  promising results / 40% response rate/ and 2 years longer OS. He noted again,no one can predict if this chemo drug can apply individually.If any of you mucosal melanoma fellow warriors is interested in getting a scanned copy of that clinical trial, please  feel free to direct message me including your E-mail address, so I can email  it to you.

Connie D.,I tried to call you this morning .I hope that you mom is doing good and feeling well with not too bad side effects in her current clinical trial.

Have a great day everyone,

T.Chasse

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momsmole's picture
Replies 6
Last reply 7/20/2017 - 8:25am
Replies by: momsmole, CindyJ, Janner

Over the past year or so, after my melanoma diagnosis last May, my husband who is 84 and a confirmed sun-worshipper all of his life, has been having some basal and squamus cell carcinomas removed from his forehead.  We were thankful they weren't more dangerous, altho he felt disfigured (the scars are very small and not very noticiable but they bothered him).  Yesterday he went to his dermatologist for a follow up from the most recent removal.  He did not tell me that three weeks ago he had noticed an odd mark on his left thigh, but knowing he would see the doc, he wasn't too concerned.  The doc took one look and said that's not squamas and wanted my husband to see a general surgeon.  Fortunately, he referred N to the same surgeon who had done my WLE so N knows him.  

The complication is that due to a heart condition my husband N is on coumadin a blood thinner.  The last time they had him off of it for a colonoscopy in 2011 he had a stroke, a mild one, but it left his speech impaired.  When he needed a colonoscopy a few years later, they hospitalized him and managed the blood thinner in a different manner with no problems.  Now he was told he'd have to be off coumadin for 4 days.  We don't know if that's because of a biopsy or an in-office excision.  the dermatologist left the office in a hurry, according to N, as if he didn't want to tell him he had cancer.  

i guess right now all we can do is consult with the cardiologist who oversees the coumadin and the surgeon who will determine the procedure.  Of course, we don't want to go thru stopping the coumadin twice if we don't have to as not only is it potentially life-threatening but stressful as hell.  

I've read on this forum and other melanoma sites that one can't tell by looking whether or not a lesion is melamona, but I've looked at images and N's spot is suspicious, more than mine was.  It's an assymetrical circle with one side kind of pink and the other like a crescent moon kind of white/gray crusty.  It's about the size of a little finger nail.  It's on the front of his upper thigh.  I know I'm worrying before we even know what to worry about, but given my experience where my mole had been on my shoulder forever and didn't look like anything other than a mole except it itched and bleed sometimes and I never once thought it was skin cancer, now I'm much more aware of what could happen.  And N is 84, heart condition, COPD, blood thinners, and could potentially need lymph node removals from groin which would impede his mobility for. while.  A more complicated situation than mine.

In the it doesn't matter category, it seems unfair both husband and wife should have to face skin cancer within a year of each other.  I've hardly gotten used to living with my own anxieties and have put off getting a care team in place due to denial.  Now I need to get it together to support him calmly and with a focus on his experience which will probably be completely different from mine.  In some ways that will be a head game.

He sees his GP today and hopes to see his cardiologist on a drop-in to see if he can coordinate with the surgeon.  His appointment with the surgeon is next Wed.  I remind myself that doesn't mean we have to immediately stop the coumadin.  We can reschedule if we don't have time to get that part done right.  But first I am scared of the risk of stroke, and then I am scared of the biopsy results, and then of course I am scared of the surgery and risk of coumadin again.

Long story as I'm prone to, but if anyone one has gone thru this themselves or with a loved one, I'd appreciate hearing your stories.  I also wonder if at 84 N's high risk of stroke when messing with coumadin outweighs the risk of possible melanoma.  Any thoughts would be appreciated.  

By the way, to update my first post from a few weeks ago, the spot on my inner lip has darkened.  I have to wait 5 weeks for the dermatologist, but I do have one now and I also have a melanoma oncologist appointment in early Sept.  This forum and those who responded to my post encouraged me to climb out of my cave.  THank you!

 

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jc2dad's picture
Replies 8
Last reply 8/1/2017 - 9:04am

I had a black line that appeared in the fingernail of my middle finger of my left hand about 18 months ago.  After a couple of months the discoloration spread and the nail split.  I made an appointment with my PCP and had him examine it along with some stomach issues I was having.  He said the nail was nothing to worry about, probably fungal or damage to the nail bed from trauma (of which I had none).  Long story short after complete deteriation of the nail bed and a raised ulceration of the skin below the nail bed and two more examinations by two different doctors (both who said it was an infection at best and prescribed anti-biotics) over the next year, I finally visit the ER because of the pain and bleeding in the finger.  ER doc immediately refers me to dermatologist and get biopsy the same day.  Preliminary pathology came back as malignant melanoma, blood work shows melanoma is already in my blood system, so Dermatologist referred me to Md Anderson, said the mitosis shows very agressive.  Don't know if it has metastized anywhere else yet, but definitely having symptoms of metastizes in other areas.  39 years old healthy with 4 small kiddos that I am raising by myself, so I have to beat this.  Have an appointment with Dr. Michael Wong at MD Anderson on August 1st.  Sorry I don't have more information at this time.  Any advice would be appreciated.

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sister of patient's picture
Replies 17
Last reply 7/19/2017 - 7:32pm

Hey all - we've had great news today to share, CT last week and results today are astounding. While onc won't say NED, we're just about there insomuch as splenic lesions appear to have resolved and last remaining liver met is gone. There's a couple of little things lighting up that they want to watch (2 new tiny spots, one in each lung but they could be anything and what is likely scarring in the spleen) so, yeah, it seems the monster is just about spent.

Onc did admit today that Leisa's tumour burden was just about the heaviest she had ever dealt with to have such a successful outcome - we kind of suspected that. She will continue Nivo for another 3 months and of course, have ongoing scans but also received a schedule now to start a slow taper from the steroids too.

So, it's a great day for us here (for some reason I can't stop crying - tears of joy though!!) and I sincerely wish everyone on here still suffering will soon get similar results and news!!

Best wishes to all!

Barb

 

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Jubes's picture
Replies 15
Last reply 7/21/2017 - 12:15pm

Hi all

just wanted to share with you that my biopsies fromfriday are clear. They took five biopsies from 2 sites in my chest and all clear of melanoma despite very hot pet scan

it seems the hot spots were likely granulomas. They didn't check the liver and neck spots but assume they are also not melanoma 

we will continue to check with 3 monthly pets but even a false negative is better than a positive

thanks to all for suggestions if it progresses

anne-Louise 

 

 

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MovingOn's picture
Replies 8
Last reply 7/20/2017 - 1:15pm
Replies by: casagrayson, Jubes, Anonymous, BrianP, Rod, bcbcbc55, miaka618

May 5th I started on Prednisone (60mg/day) due to hypophysitis from Ipi (diagnosed via MRI). I tapered down by 10mg every 7th day until reaching 5mg. I have been at 5mg/day for more than 4 weeks now. But whenever I try to stop completely my headache comes back.

Have others remained on prednisone for more than 9weeks following hypophysitis from Ipi?

I don't see my Endo. again until mid August, that is when we will come up with a long term plan (88mcg levothyroxine, testosterone, cortisol, ?)

Diagnosed Jan 2017 (stage 3b with unknown primary). Radical neck dissection Feb 2017 (4 positive nodes in level 5A). Ipi started Mar 2017 - ended May 2017 (Hypophysitis)

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Toby0987's picture
Replies 4
Last reply 7/19/2017 - 1:07pm
Replies by: Anonymous, Toby0987, BrianP

Hello-I've been holding steady at 3B since 2013. I see Dr Markovic at Mayo in Rochester, MN. About a year ago the PET picked up low level FDG uptake near my appendix and left mesenteric lymph node. It has grown slightly from .6cmx.6cm to 1.2 cm x.8cm. Have any of you had similar hits on your PETS in this area? I have no Symptoms of appendicitis, but the spot never goes away. Any thoughts? Dr said if I get symptoms to come in right away. He will do a colonoscopy and biopsy the area next PET (5year NED anniversary). 

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MTCowhand's picture
Replies 4
Last reply 7/19/2017 - 1:54pm
Replies by: MTCowhand, Janner

I live in an extremely remote valley in Montana, closest stoplight is 52 miles away and it is much easier finding a doctor for a horse than a human.  There is in theory only one melanoma specialist in the whole state, which I saw last Friday (I am stage 2b), and I am interested in getting a second opinion.  So can anyone out there recommend another oncologist in this land of the Big Sky and little else?

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/17/2017 - 12:37pm
Replies by: TigerMom, Janner

I am seeking advice regarding a recent biopsy report.  I was diagnosed with Melanoma in Situ in December 2016 and recently returned for a six-month skin check.  A "mole" was removed and the following patholgy report was sent back: 

Right lower back: H&E stained sections reveal a shave speciment of skin in which there is a compound melanocytic proliferation. Within the epidermis the melanocytes are arranged within small nests and single unit cells with mild atypia and disorganized growth yet without full confluence or significant pagetoid spread. Within the dermis there are scattered superficial nests admixed with a patch lymphoid inflitrate and scattered melanophages. Overall lesion appears to be small and relatively well-circumscribed.

IMPRESSION: Right lower back: compound lentiginous nevus with mild atypia, not identified at a margin in the sections examined.

This was read at dermatopatholgy NE in Bellevue, WA on 6/27/2017.

My dermatologist contacted me by letter with a note that said, "contact me if it repigments."

For peace of mind, should my husband and I be assured this is nothing of concern. Or, knowing I was diagnosed six months ago with melanoma in situ, would the recommendation be made to have the original and this present slide read by a melanoma center.

Thank you for helping us understand the report.


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Anonymous's picture
Anonymous
Replies 3
Last reply 7/19/2017 - 7:01pm
Replies by: Anonymous, Ridingaroundwith27Jennifers

Stage 4 with prior but not current lung mets. I'm on Keytruda and recently I have developed a sharp pain in the upper right lobe of the lung. It does not impede my breathing -- is this something I need to get looked at immediately? I worry about future eligibility for clinical trials as a result of Dr.'s employing steroids out of an abundance of caution. Has anyone had this sort of lung issue come and go? The moment I have breathing trouble I will certainly go into see someone.

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J.bun's picture
Replies 10
Last reply 7/20/2017 - 6:48pm

The last week has been tough.  After clear scans and what appeared to be a complete response in May, it appeared to be time to switch from BRAF pills (Taf/Mek) to "maintenance" on Keytruda.  The idea being we got the maximum benefit from the pills and the Keytruda would keep things at bay/teach my immune system to fight off any malignant cells in the future.

Like so much of this experience, this has not gone "according to plan."  Last week, I noticed a lump in my groin (same place as Nov 2016). While the thought of pseduo-progression came to mind, I knew it wasn't -  and this was confirmed with fine needle biopsy.

Later today I am having a full body PET CT and brain MRI - hopefully the melanoma hasn't spread beyond my groin.  On Weds. I'll find out the results and hear about next steps for treatment.  I won't be surprised if I go back to Taf/Mek, but know I need a long(er) term treatment plan.

I'm not done fighting - but man, am I scared.  I think of you all, my fellow comrades - as we fight together. 

- J.

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Scooby123's picture
Replies 7
Last reply 7/19/2017 - 3:32pm

Hi all hope you are well,

confirmed its back in chest lymph node. So treatment ippi 2 years ago . Not sure on treatment plan not seen doctor as yet. Anyone who had chest lymph node involment and what treatment had. 

 

They might consider radiotherapy but it's close to my windpipe the node.

scooby xx

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Anonymous's picture
Replies 2
Last reply 7/17/2017 - 11:53am
Replies by: jennunicorn, Anonymous

What have you heard or experienced with Vaccine Treatments?

Hi everyone, this is my first post on the forum. My dad has Stage IV Metastatic Melanoma. I am seeking advice on new treatments that have shown results of improved quality of life and survival outcomes. I have done some background research of my own on treatments and this is what I have found so far:

It seems that one of the most common methods of treatment of malignant metastatic melanoma is chemotherapy with Dacarbazine, or DTIC. It is a cytotoxic drug and one of the few drugs approved by the FDA for treating cancer¹.

There have been studies on the use of Temozolomide, or TMZ, which has shown efficacy at least equivalent to DTIC in patients with melanoma. But overall, TMZ showed an advantage in terms of improvement in quality of life¹.

Another area of treatment focuses more on the immune system. One study MD Anderson Cancer Center researched a three drug combination of cisplatin, vinblastine, and DTIC. The Phase II and III trials suggested a benefit of cisplatin when added to DTIC for patients with the metastatic disease¹.

Combination therapy with Oblimersen sodium and DTIC has shown a significant survival benefit¹.

Biochemotherapy is another area of treatment that has been investigated. Overall, this method of treatment has indicated improved response rates, but not in survival rates. One study by Eton et al investigated CVD (combination treatment with cisplatin, vinblastine, and dacarbazine) vs CVD with intravenous IL-Z and subcutaneous IFN-d¹.

The research on vaccines as a treatment option are of particular interest to me. So far, no vaccines have been approved for prevention or treatment of cancer. However, the use of allogeneic (involving cells that are genetically dissimilar) whole-cell-based vaccines has become more popular². Up to date, the most successful vaccine has been Canvaxin, which contains three irradiated (being exposed to radiation), allogeneic melanoma cell lines between them expressed over 20 different melanoma antigens (toxic/foreign substance that induces an immune response)².

Even though it seems that there has been increasing interest to research vaccines for cancer treatments, there has not been exceedingly substantial progress. This is in part due to investing, but also taking into consideration the high production costs associated with vaccines. Some studies have been halted in later phases of clinical testing because the results have not shown improved survival outcomes². On the other hand, a decent amount of preclinical studies focusing on immunotherapeutics, including vaccines have been shown to enhance anticancer immune responses². The numerous studies of vaccines seem to have varying results, due to the altering the constituents of the vaccine itself.

I have just begun my research on new treatment options, but does anyone have any suggestions on studies to look into or any clinical trials that my dad could participate in? In addition, do you know of anyone who has participated in any vaccine trials? Thanks!

 

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