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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Dhva's picture
Replies 1
Last reply 8/31/2017 - 7:16pm
Replies by: J.bun

New lump (4x3x4 cm) found on 8/5. (Dark freckle noted in surgical site of primary 7/15).Positive PET scan 8/15. Appointment with surgical oncologist 8/24.  No communication from oncologist and results from tests found on the patient portal. Waiting to find out a surgical date. How long does it typically take to set up surgery in a case of probable recurrence?

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dabernethy's picture
Replies 2
Last reply 8/31/2017 - 10:23am
Replies by: Ed Williams, Bubbles

In May I was diagnosed with Level 4 Melanoma on my back and a precancerous spot. As soon as I was diagnosed, I had a mammogram and pap test. I had both spots removed in June, along with biopsies of lymph nodes. I also had an MRI and PET Scan. Those came back as Stage 3A Cancer, angiolymphatic, but it did not spread to any organs. I went in on August 15th to have those lymph nodes removed from my neck and under my arm.

A week after surgery I went in to have a drain removed. I was told my pathology report was not available. I go in on Sept 5th to have bloodwork, the last drain removed and to discuss immunotherapy. Interferon and Yervoy are the two suggested. Wait and see is not suggested. Then I got a call that they decided to do another mammogram. Not sure if I should be concerned. Well, of course I am concerned. 

I'm reading mixed signals on both of the treatments though. I did check with my insurance, and both are approved. I would love to hear from others who have gone through this and have suggestions. Or suggested questions to ask my doctors. Thanks to these forums, I've learned that I need to start a probiotic, and I am asking that question as well so I know it's in my chart. 

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/31/2017 - 10:07am
Replies by: cancersnewnormal, jrtufo, Anonymous, Bubbles

Hello, my mother was diagnosed with Malignant Melanoma in 2014. She had undergone surgery wide excision and reconstruction on left lower part of abdomen and hip region. In 2016, she had left inguinal LN recurrence and  went through Left ileo inguinal block dissection. Currently, she is detected with BRAF v600 mutation. PET scan shows metastatic liver, spleen and bone lesion.

The doctors are suggesting either to go with Zelboraf or Chemo therapy. Can you please suggest, will Chemo be useful in case of Malignant Melanoma?

If we go with Zelboraf 960mg, 4 tablets in every 12 hours, will this help? I wanted to check, how effective Zelboraf is, and will it help curing Malignant Melanoma? This medicine is not readily available in our country and if it is, the suppliers are sellig at a very high rate.

Can you please help me decide if I should go with Chemo therapy or Zelboraf? 

Your quick respose is highly appreciated.

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Scooby123's picture
Replies 16
Last reply 8/30/2017 - 5:27pm

Hi all hope you all are good as can be expected. Please can who has had or on keydruda give me there experience with side effects. When started and what. I have only had 1 dose not much side effects apart from little upset stomach and strange pins and needle feeling in arms and hands on and off. I am off for second dose Tuesday coming. The consultant said it can interfere with the nerves.

 

Scooby❤️

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ashlee12's picture
Replies 17
Last reply 8/30/2017 - 4:45pm

So I have questions about melanoma that I'm not to sure about . How does it spread and how does it get into lymph nodes? Is it a by blood thing?? 

 

Also so I read its a fast spreading cancer... Does that mean it can spread in a week a year ?? 

i currently have stage 0 so I wanna know what can happen

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GAngel's picture
Replies 12
Last reply 8/30/2017 - 4:16pm

Dear Karen,

It's been weighing heavy on my heart that you may not have seen my reply back to you on a previous post of yours wherein you stated that Tafinlar is dabrafenib and mekinist combined.  I want to make sure that you know that you have the wrong information as Taflinar is NOT the two combined.  Please read my reply to you regarding this subject which I pasted below.  I just wanted you to realize that you are not presently taking the combo if you are only taking Tafinlar and you should contact your oncologist for further clarification and so that you can start taking the Mekinist (trametinib) with the Tafinlar (dabrafenib), if that was your intention.

"Tafinlar is not dabrafenib and mekinist combined. These are absolutely two separate drugs. Dabrafenib is the scientific/generic name for the drug being sold by GlaxoSmithKline under the trademark name of Tafinlar and Trametinib is the scientific/generic name being sold under the trademark name of Mekinist. These drugs can only be dispensed through a specialty pharmacy and will come separately and the Mekinist(Trametinib) is delivered in a cold package and MUST always be refrigerated. Although I have heard of at least one person who was unable to get their insurance to pay for the combo because of the lack of FDA approval our insurance covered both drugs and so have many other insurances, apparently.  At least give it a try as your doctor is not prohibited from prescribing both drugs.  I may be wrong, however, I believe that obtaining FDA approval of the combo will help prevent any insurance coverage issues." 

Wishing you all the best!

Love and blessing to you and yours!

Gina 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Jewel's picture
Replies 2
Last reply 8/30/2017 - 12:40pm

Hi there,

My husband just got the latest results from his scans. The good news is the Oncologist told us that my husband is stable, no melanoma. He precedes to tell us a 1-1/2 in mass has showed up on my husband bladder which for some reason he thinks has very little chance of being melanoma. My husband also has an enlarged prostate. An appointment is being made with an eurologis asap. Not sure what to think of these results but if it isn't melanoma then that would put us at 2-1/2 yrs NED with Yervoy. Trying to remain positive. Thanks for listening.

Jewel

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/30/2017 - 11:04am

Just wondering if anyone else has experienced headaches while on this combo?

Thanks.

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Happy_girl's picture
Replies 27
Last reply 8/30/2017 - 7:50am

I know this topic has been brought up before.  I have tried to do a lot of research about it on my own. Is there a true correlation between pregnancy and melanoma.  I was diagnosed 6 weeks After giving birth to our first baby.  She will turn 1 in a month. ( hard to believe! :). We are not ready to have another one yet, but I have just been thinking about if it's a reality or not to even think of having another baby.  I went to mskcc for a 3rd opinion.  The dr I saw there, when having more children was brought. Up, said wait about 3 years.  My oncologist at the james center (Ohio state) said wait a year.  I'm just curious what your thoughts and opinions are.  I want to have another one, but also don't want to leave my daughter and husband.  I'm not sure what to think. Help! 

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While having a biopsy on my butt today (laughs allowed), my derm asked me if I used a roll-on or a stick deodorant.  He said a study out of Europe indicated using a stick deodorant allowed you to feel enlarged but not painful nodes easier than you might otherwise do.  So if you're not that picky on the type of deodorant you use, and your melanoma location might drain to your axilary nodes, a stick brand might be a simple self-check tool.

http://www.MelanomaResources.info

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Jdc's picture
Replies 6
Last reply 8/29/2017 - 11:22pm
Replies by: Jdc, BrianP

Hi all, I finally got in to  melanoma specialist for my second opinion. unnfortunatley it was after i started 1 round of ipi, the specialist advised me that a pdl1 test should have been done as was not. He sent for the test and it was positive pdl-1 and also braf positive. he advised that i not resume ipi and start on keytruda along with radiation on another spot on lung that grew from 6 to over 9mm in 3 months. I had some pituitary swelling about 4-5 weeks after ipi infusion causing severe headaches and some vision changes.Wondering if anyone knows if keytruda will effect this also? i see the doc this friday ill update more then. Thank You all!!

Joe

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/29/2017 - 8:20pm
Replies by: Nemesis, jennunicorn

I really am thankful for all the support this website provides and I would like to use this post to kind of vent and ask for support and see what others have experienced. 

This post is about a relative. 

32 y/o female notices a strange mole on hip in May of 2017. Within 3-4 weeks went to dermotologist and had a biopsy done. Results came back as melanoma depth at least 0.71MM, superficial spreading, (I am sure I getting this wrong, negative ulcaration?). Doctor said this is the best possible news and she should have it removed via WAE, biopsied, and then be re-examined every 6 months. Nothing further needed. No sentinal node biospy needed. The office could not book the WAE for 6-8 weeks so we decided let's get this out of her ASAP and went to a different dermatologist. The day of the initial appointment he did the WAE and send it out to biopsy. When we got the results back the final depth ended up being 0.95mm with CLEAR MARGINS and he said she probably did not need it but just to be ultra safe go to a sentinal node biopsy but the chances were very slim they would show positive. 

Went for the sentinal node and they injected the dye and found 3 nodes, removed them all, and yes you guessed it they ALL came back positive. Doctor said this is extremley rare and he was shocked. Now we are waiting for PET scan and Brian MRI results. Obviously super scared and nervous. It seems insane that this < 1mm superficilal mole with clear margins has now possibly caused who knows what. I know we won't have a plan of attack until we get the full results back but we are expecting the worst and want to know if anyone else has gone through this and what to expect. Thanks so much for your time! 

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Bubbles's picture
Replies 19
Last reply 8/29/2017 - 3:18am

Hey guys, 

Having written the basics of current care for melanoma (for Stage IIIb and up) for folks on this forum and via emails at least every other week for years....it suddenly dawned on me to put it together...for realz!!!

So...here you go:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html  

Feel free to pass the link on to any that you feel might find it useful.  Wishing you all my best.  Love, celeste

 

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Jimchief's picture
Replies 9
Last reply 8/29/2017 - 2:35am

My Derm told me my nickel-sized mole was "probably melanoma" and based on the sample he took as a shave biopsy it was "probably more than 4mm thick." 

Pathology came back today, and he was right on both counts--T4b officially. As I understand it the next step is to get the entire tumor removed and then check on sentinel lobe and some other lobes.

Some hopefully easy Q's: 

(1) Because the Derm did just a "shave biopsy" (and it's clear he didn't attempt to take all of it because it's just a shave), I'm assuming that what this pathology report (i.e. from the shave biopsy) says about "margins" is basically meaningless? In other words, when you're interpreting margins, I assume that's germane only after they cut out the entire tumor so the pathology gives you some sense as to whether they "got it all"?

(2) Lingo Q: When I go do the surgical oncologist and he/she cuts out the whole thing, am I right that what folks here refer to as a WLE? Wide Local Excision? I assume that's what they'll do? And if so, am I right that there will be a NEW pathology report that talks about "margins" and what that report says help us to know whether they got it all?

(3) Sentinel Lobe stuff: What all is involved in that? I'm assuming the WLE and this test are basically out-patient? Is there anything about those procedures that should make me plan to be out for a few days, or is it the type of thing where physically you bounce back that day and can go do whatever you had planned to do? (I know that I can ask all this of the surgical oncologist, but I may not hear from them until later this week and it'll probably be 2-3 weeks before I get in for the WLE and SN biopsy per my Derm's office.)

Thanks to all who read and monitor. or answer It looks like, depending on lobe involvement, I'm Stage IIC at best or Stage III or IV at worst, but I'm going to assume and hope for the best until I hear otherwise. I'm so thankful there's a place like this where I can express my concerns and get some answers from those who have trod down this path before. I hate to wait, and it helps me psychologically to scout out some of this info so that I know how to work my way through the minefield. Thanks again for your help.

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yoyopt's picture
Replies 4
Last reply 8/28/2017 - 8:26pm

I'm currently waiting to heal from my 1st surgery in order to get my 2nd surgery (Complete Lymph Node Excision) at that point my stage will be updated and I will meet with my oncologist to plan immunotherapy treatment.

Right now I feel ok. My doctor does not want me to return to work during my treatment- 6 months to a year- I am a Physical Therapist, so my job involves a lot of activity and heavy lifting. Not working is so strange for me, especially when I dont feel sick...My doctor says the treatment can be hard hitting...its also weird to have so much wait time before I start treatment that will make me sick.

I'm 40yrs old. I am a single mom with a 1 year old daughter. I love boxing, and spinning, and yoga. I love sunshine and water and being outside. 

I have no idea how to feel right now, or what to expect for this next year of treatment. If anyone can help with their experience please let me know.

 

Dhana Harrelson

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