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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Nemesis's picture
Replies 6
Last reply 8/23/2017 - 9:33am

T1b here, 9 months post WLE and SNB. My melanoma was discovered during my post partum period (6 months after giving birth). I am not sure if a second child is off the table for me at this point. I want to wait for two years before trying to conceive, but I have read studies that say melanoma is worsened by pregnancy, therefore I am not sure if I should even risk it.

What would you do in my shoes?

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baesill's picture
Replies 4
Last reply 8/17/2017 - 6:06pm
Replies by: J.bun, jrtufo, Anonymous, lindanat

Hi everyone,

So I'm about to start this combo and I feel really confused about the sun sensitivity thing. It sounds like I can't let sunlight hit my skin...ever....even with sunscreen. Do I just have to stay inside now? Is it possible to go swimming outside? Or can I take my kids to the park? 

How do people adjust to this?

thanks for the support everyone!

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Bradley75's picture
Replies 4
Last reply 8/15/2017 - 10:26am

I am about two and a half weeks post op from having a tumor removed from near my spine.  The tumor was located at T-5 and was about 2 inches.  It had grown into a nerve and some bone so the surgery involved cutting a nerve and grinding some bone.  All in all things went really good.  Recovery has been painful, but it is getting less by the day.  Tomorrow is a big day with stitch removal, radiation simulation, and starting Keytruda once again.

Now for the strange part.  I have been on Keytruda for a few months.  It worked well on my lung mets, but it wasn't stopping the T-5 tumor/  When the surgeon got to it, he said it was like "snot."  I had never heard of that before.  I asked several questions of my medical team about that and the best I can tell is that the Keytruda had softened the tumor.  He said it makes it easier to remove more when it is soft because they can use suction to suck it out. 

I am sharing this because my PET showed no real sign that the Keytruda was working on that tumor.  However, when they got in there during surgery, it appears the opposite is true.  I find encouragement and new hope here.  The Keytruda was doing more than they could detect with MRI and PET. 

Keep Fighting,

Brad

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Jabujj's picture
Replies 17
Last reply 8/16/2017 - 5:36pm

So as some of you have seen in my original post, my fiance was diagnosed with melanoma...the biopsy revealed,.86 thickness, clark level 4, mitioc rate 1, no regression, no signs of vascular invasion or ulceration or sat mets.

Now, I am facing a dilema. Through my family doctor I have an appointment with a plastic surgeon on aug 24th to do the WLE. This doctor runs a weekly melanoma clinic.

In my haste and before this appointment was scheduled I had found another plastic surgeon who treats melanoma (not specifically) at his private clinic. We have an appointment with him on the 17th. 6 days sooner...

Both are very good doctors from what I have read (none of them are specialist in melanoma but both have experience with it).

My question is: There is only been talk of a WLE..her family doc was not to well versed in melanoma...we would like a Setennial lymph node biopsy because of clark level iv...is this something that would be offered in a clinic setting (as it is not a hospital). Janner said that the node biopsy has to be done at the same time as the WLE so we dont want to show up at the surgery appointment only to not go through with it because the node biopsy cant be performed. I am going to phone on monday but it is so hard to contact people in the know and get stuff answered.

Second q: my fiances family doc mentioned of keeping it with the appt on the 24th because it might make things more streamlined because she knows that dr. In your opinion better is the speed of the local WLE more important right now?

Regardless we want the sentinal node biopsy but dont have an appointment anywhere with an oncologist or in a hospital, is this something that can be done outside of a hospital setting?

Confused.

Thanks

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ryanbkyle's picture
Replies 12
Last reply 8/15/2017 - 11:38am

I'm Stage 3A and completed my 4th Yervoy (10 mg) infusion in June.  I got through all four pretty well until last month when I developed some side effects.  Come to find out, my pituitary gland stopped working and now I'm on thryroid medication and sterioids for the rest of my life.  I'm feeling great now, but am wondering if I should go through with the 3-month maintenance infusion that is coming up in September.  I'm worried about additional side effects developing.  Can anyone offer any advice? 

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Raluca's picture
Replies 10
Last reply 8/12/2017 - 3:21pm
Replies by: Raluca, Nemesis, Anonymous, UBContributor, Nanners10

Hello everyone ,

I have been diagnosed last September with T1A melanoma on abdomen, breslow 0,37, Clark 3, no mitosis, no ulceration , no regression . After WLE only check-ups every 3 months including derm control, blood tests and ultrasounds. Everything ok but now I am feelin a pain in the groin next to the surgery. The ultrasound of the nods reveals no problems, but I am scared. I don't know how a malignant node feels like, is it painful?

thank you! 

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Jabujj's picture
Replies 15
Last reply 8/19/2017 - 4:43pm

Hi everyone,
Its been 4 days since my fiances diagnosis and I havnt been able to sleep. Her report indicated:
.86 breslow, clark level 4, 1 mitotic rate, no ulceration, no regression, and no satellite mets

I was under the impression that generally anything under 1 breslow has a better prognosis and that they dont use the clark scale anymore...but after reading this study it strongly implies that clark does not matter in most cases, except with clark level iv because it is a special subset...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1250844/

why did they get rid of clark when it details how deep the cancer is and closer to the bloodstream, hence a better chance of spreading. The doctors addressing my fiances case are not rushing it because they are going strictly off of breslows thickness...

So tired and worried...

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MelanomaMike's picture
Replies 2
Last reply 8/11/2017 - 12:58pm
Replies by: iskitwo, jennunicorn

Hi everyone, hope yer well and kickin but through treatment. I just wanted to check in & let you all know (if you dont know already) about a real good, new program on television called First In Human airing on the Dicovery Channel. Its hosted by none other then Jim Parsons of The Big Bang Theory (which is a great pick for a host!...Did i mention i split open my last surgery? A week after staples where out, i knelt down & split! I thought it was my shorts lol..so, treatment is delayed because of it as i attend the Wound Clinic twice a week for cleaning and packing/wrapping...just great..ill kerp ya posted, i see my Oncologist Monday...take care..Mike...

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Hi everyone, hope yer well and kickin but through treatment. I just wanted to check in & let you all know (if you dont know already) about a real good, new program on television called First In Human airing on the Dicovery Channel. Its hosted by none other then Jim Parsons of The Big Bang Theory (which is a great pick for a host!...Did i mention i split open my last surgery? A week after staples where out, i knelt down & split! I thought it was my shorts lol..so, treatment is delayed because of it as i attend the Wound Clinic twice a week for cleaning and packing/wrapping...just great..ill kerp ya posted, i see my Oncologist Monday...take care..Mike...

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Sharon93065's picture
Replies 13
Last reply 8/18/2017 - 12:51am

y blood panel came back.  My liver nunmbers so  high that as i was reading them my oncologists called me.

Put me on Predisone starting at 5pm today. Pharmacists said i will be up all night.  That will be ok if i had any enery.  Then 5 at noon tomorrow, and 5 Sat morning.

I am so said that i did not make it to my 4th treatment of Opdivo/Yervoy.  I also will have lab work every day watching my liver numbers.  He asked how i have been feeling.  Oddly enough i feel fine except extremely tired.  No nausea, diarrhea, fever etc.  (Please Lord and do not let it start.)  I  have read on this forum that the Immunotherapy can keep working in me even without getting the 4th treatment.  And i can still get maintenance.  Dr said let's get liver numbers down then we can look at our options for further treatment.

Last January before i knew i was sick 8 of us ladies booked a 8 day Viking River Cruise Paris to Normandy. 

I didn't get the insurance because it was costly and you didn't get  your money back on this one just a credit.  Should have gotten outside insurance but too buy at the time.

Anyways the timing today is good because in 2 more days i would have lost 35% and not I'm only losing 15%.

Total cost of trip was only $2599 including air.  Oh well, my health is more important.  I cried when i heard my 4th treatment was canceled.  Thank you all for your support and important info i have gained thru this forum.  

By the way i did test positve and can get the Targeted Therapy.

Sharon from Simi Valley CA

Kaiser Woodland Hills, Dr Wang Oncologist. 

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Dave63's picture
Replies 2
Last reply 8/11/2017 - 2:18pm

I had 4 moles removed 5 weeks ago (one diagnosed basal cell and one malignant melanoma) and was wondering if it is typical that other moles change after biopsies. I have about 8 other atypical moles from 3 mm to slightly larger than a pencil eraser. Some of them have started growing in the last 2 weeks and some of them have grown together. I didn't know if this was normal.

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Kootenay Kid's picture
Replies 3
Last reply 8/11/2017 - 12:53pm

I've only been diagnosed for a month so I've just moved myself beyond denial & booked in for Wide Local Excision + Sentinel Node Biospsy surgery.  My story is so similar to many posted here. If you find yourself denying a melanoma diagnosis, reading the personal accounts here will move you from denial into facing a sneaky, nasty, malicious, terrifying cancer.

I've had my neck mole for at least 40 years & it never caused me any grief ... until now. I think it was my dermatologist's intern who said 30% of melanomas begin as moles. My mole didn't hurt. True, it had been getting darker & enlarging very gradually during recent years & I had thought about getting it checked out but any skin spots I'd sheepishly asked GPs about over the decades had been dismissed as nothing to worry about. I noticed other spots & changes on my skin & assumed they were all the result of aging. This week I was checked over by a dermatologist's intern & the derm. They didn't find anything remarkable about any of the other splots or moles on my skin, apart from what the intern termed "the ugly duckling" on my neck = the mole that has morphed into invasive malignant melanoma. Getting a derm appointment in Canada is not easy -- you need a referral from a GP, which means your GP has to deem it necessary. So if you have a spot bigger than a pencil eraser that you wonder about, start asking your GP about it.

My eldest daughter told me her GP checks over her skin every year at the time of her annual breast exam. What a good practice!  With the rigors of every day living, many of us are focused on getting enough sleep, trying to eat as well as possible, getting some exercise, maintaining our homes & vehicles, looking after our families, etc.  & we don't pay much attention to moles. In Spring of 2017 I was at a walk-in clinic seeing an older female GP about a minor breast infection. She noticed my neck mole & said, "you should get that checked out". I didn't do it for another 3 months because I was consumed with cataract surgery during the Spring of 2017 (my vision had aggressively diminished, my eyes were itchy & sore). By late June, cataract surgery was over & had been successful even though the itchiness continues. If it hadn't been for my following up on the incidental remark by that female GP, my malicious mole would still be growing & my melanoma unknown.

My very matter-of-fact GP heard me about the neck mole recommendation & said, "it's probably nothing but I'll scrape it so we'll know for sure". Scraping turned out to be an incisional shave biopsy done with needles of local anesthetic (like at dentist) & a # 10 blade that extracted a 1 cm crater which took about 3 weeks to heal. Pathology came back in early July: pT2a, mitosis 1, vertical growth, spreading melanoma, depth at least 1.1mm (but yet unknown as sample didn't get to the bottom of it).

Consults with derm & General Surgeon followed. My surgery planned for next month is an eliptical 1 cm circle around the mole (total diameter 3 cm) which the surgeon tells me is "world wide standard" providing 95% clear margins. Can anyone confirm or add other info in this regard?

There are 3 nerves in my neck area that are in this area, which if severed, will cause permanent damage; one might cause the left corner of my mouth to droop (like a stroke victim), one might make me unable to shrug my shoulders & the older will make my ear numb. Surgeon says he thinks he can avoid this awful collateral damage but the risk remains. The Sentinel node is for staging so the derm will know whether any more treatment is needed. I'm aware the pathology report will provide the critical info.

Emotionally it's overwhelming to be spun into this medical loop, to have to put my life on hold & subject my body to surgery, to have to tell family & friends that I've been hit with this, to need help instead of being the resource & caregiver. Sometimes I feel angry, depressed, anxious in the same way that many others posting here express when facing the scourge of this disease. I remind myself there are many diseases & afflictions people have endured in ages past, that I've lived 6 decades overcoming or accommodating problems that came my way, that something will get me in the end, but for today I'll try to do the best I can with this situation. Other times when I'm happily doing normal activities, I feel calmer & OK. Some of the posts on this site I can't read because they detail how difficult the path ahead can get & I don't want to embrace it until I have to, if I have to.

I am annoyed at how brutal & crude today's cancer interventions of "slash, burn & poison" are, the amount of money cancer research has had over the decades & how limited management of cancer still seems to be. I do think western society is on the cusp of new treatment methods (genetic) that will make cancer less harsh for coming generations.  It's about time!  Meantime I acknowledge we're living longer & now 1 in every 2 Canadians will experience cancer sometime during their lives, & 1 in 4 will die due to cancer. There are so many types of cancer & research has made more progress with some varieties than others. Melanoma is one of the cancers now employing some improved treatment methods. Let the research continue!

From a public education standpoint, how do we get Canadians to pay more attention to their skin? All young families now use sunscreen on their kids. Is it enough? I see so many young women exposing so much skin I start thinking covering up is a better choice. A very different choice in clothing is made in other cultures. I see so many people with huge tatoos that are meant to be seen, not covered up & I wonder how this fashion works with skin cancer detection?  How do we make dermatologists more available to Canadians -- through smartphone apps? So many people posting on this site note their mole didn't match the posted pics for melanoma. I thought mine was less important than it turned out to be too!   

Does anyone have any comments regarding the best of melanoma care in Alberta Canada? I'm aware the Tom Baker Cancer Center in Calgary and the Cross Cancer Institute in Edmonton are 2 facilities offering melanoma treatment. I'm interested in any personal experiences or recommendations.

 

 

 

 

 

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/10/2017 - 11:47am
Replies by: Anonymous, Sharon93065, Kootenay Kid

Hi, I'm new to the forum since it's 2 weeks that i have been completely stressed out about a biopsy i had on July 27. They told be the results would be available in 3-4 weeks ... today I got a letter in the mail saying my appointment is on September 7 th !!! This is 6 weeks before I will hear back and I can already anticipate the next 4 weeks of waiting are going to be worse then the last 2.

Attaching a photo does not seem to be working but is it possible that it is nothing ? Would I feel something specific if it something more advanced? Any advise on what I should pay attention to would help.

Thanks!

 

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Anonymous's picture
Replies 1
Last reply 8/8/2017 - 9:35pm
Replies by: Janner

I've had more atypical moles removed than I can count. All mild and moderate. My doctor doesn't go back to remove all mildly atypical cells. Is this the norm? I'm so tired of hearing different things and reading different things and not knowing what to believe. Every mole I've had removed was changing. Why isn't it important to remove mildly atypical cells? Also, if these cells were to turn cancerous would I still be able to see it or would my scar cover it?  I honestly have no idea if I should be concerned about this or just let it go. I have a skin check in 10 days but I want advice from you guys before talking to my doc. I can spot the moles he's going to want to take off and he'll want to do a shave biopsy. Is this legit? I trust him but the interwebs contradict his theory on mild atypia (he doesn't think it's anything to worry about). Frankly, Dr. Google scares the living daylights out of me. If I'm over-reacting, don't hesitate to call me on it. Thanks, guys. I appreciate your time and knowledge.

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Hukill's picture
Replies 7
Last reply 8/11/2017 - 11:44am

In June I was told I was in remission after 14 months of nivo/ipi combo and ipi alone. I had another scan last friday and now being told NED!!!!!!!!!!! Don't know if there is much difference between remission and NED but it just sounds better. I still get ipi every other week and dealing with multiple side effects but small price to pay for no melanoma. Vitiligo is still spreading, started on hands and arms but has moved to ankles and knees, love it as it is a positive sign.

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