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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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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AliCat61's picture
Replies 9
Last reply 7/19/2017 - 3:54pm

Celeste, if I am remembering correctly, you mentioned some recent studies that may have suggested that steroids (prednisone in particular) can be taken while on immunotherapy without having an adverse effect on the efficacy of the treatment? Am I right about that? Can you point to a particular blog post or study? I am currently scouring your blog trying to find something about steroids and immunotherapy. My husband had some pretty severe side effects while on Ipi/Nivo. Hre received 3 out of 4 scheduled treatments. He was put on prednisone for 3 weeks (20 mg twice a day for a week, 10 mg for 1 week, then 5 mg for 1 week.) It was wonderful! I felt like I had my husband back, He was feeling great, breathing well, and was active. He has now stopped them and is scheduled to start Opdivo maintenance infusions tomorrow. Unfortunately, just in the 3 days since he stopped taking the steroids, the shortness of breath is back, very noticeable, as well as just generally feeling "bad". I wish I could elaborate but he is a man of few words. His current oncologist says absolutely not to continuing even a low dose of steroids while on immunotherapy. I'd like to be able to point him to something that might change his mind, and if I can't change his, then I would like to request a second opinion and be able to speak somewhat knowledgeably with a melanoma specialist at USA in Mobile. Any input would be so greatly appreciated. In the meantime, I will continue to scour your blog. Thank you all for all that contribute on this forum!

Alison - wife of Roy, Stage IV Metastatic Melanoma

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Not important, we're just curious. My sister's 50-year-old vaccination scar on her shoulder suddenly turned itchy, bumpy and developed a red ring around it. Her derm actually noticed and asked her about it, then he zapped it off.

Anyone else ever had any kind of immuno do that?

Thanks. Best to all!!

Barb

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thinkingofu's picture
Replies 13
Last reply 7/19/2017 - 4:43pm

Hello everyone!

My mother has just been diagnosed with Melanoma Stage IV. She lives in Eastern Europe at the moment, and I am afraid she will not receive the best possible treatment there as she resides in a developing country. Doctors themselves stated we should move her to Germany or similarly developed European country. And, ideally, USA when she feels strong enough

Here is our background:

She started to feel very dizzy a week ago, hospital ordered CT scan which showed 3 metastases in her brain and a lot of swelling around two of them.

There was also a mass found in her lung.

Doctors determined it was melanoma stage IV. She removed a mole 5 years ago in the same country, but the doctor did not send it for review (as it turns out, even though she asked him too. He said there is no need), so we had no idea she was living with melanoma  all this time.

She had an operation yesterday on her brain during which the swelling was relieved as well 2 of the metastasis removed.

Initially, as we found out about diagnosis, we were upset, as any loved-one would be, but then I started reading about new treatments that may give us hope (including this forum). Am I correct when I say that 

SRS combined with Ipi/nivo would give us the best chance?

What about Ipilimumab (yervoy) Opdivo and Anti-PD1? In isolation they are not as effective, correct?

And what about more conventional chemo drugs? I read there are not as effective, but are some more effective than others?

Sorry for so many questions, but since they are preparing for chemo, we need all this information to actually guide her current doctors in the right direction since they admit themselves to have very little knowledge about new developments in melanoma treatment. 

And final question, I promise (sorry): Have you heard of any good western european clinic that uses the latest protocols for treating this desease? I am aware we will have to pay for it from our own pocket, and its OK, I am prepared to sell everything I have just to save my mom. 

Thank you for reading this post and if any of you could share your experiences regarding treatment protocol and good clinic/doctors my mom and I would appreciate it so much

xxx

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Anonymous's picture
Anonymous
Replies 8
Last reply 7/19/2017 - 5:03pm

Hello everyone, thanks for having me, my name is Mike & i now have stage 4 Melanoma up from 3B a 6months ago, i was first diagnosed in 2008 and have had 6 surgeries to date {my last one on June 29th 2017}  and the tumors seem to love my left leg & groin {lympnode area}. Im sad to report that my last set of CT & PET scans revealed a medium sized suspecious "possible"  tumor on my lower lobe of right lung & a smaller one on left lung. Hopefully next week ill drive out to Kaiser in Fontana California for a second opinion, i went there after my first surgery in 2008 but they said just keep up the scans and surgeries as needed. Now, 2017 its came back 5 times with a bonus in each lung. Im not happy about surgery, my Thorax Dr. explained its not a simple one, braeking of ribs, cutting muscles, collapsing lung, poking/proding for the tumor, drain bag etc. Im gunna push for treatment in way of Chemo or something, its obvious this Melanoma i have is refusing to leave my body. This last tumor they took out was apparently "Not" related in DNA to all the prior ones, so, its a new "strain" of sorts...anyways, another Melanoma Brother is on board here at MRF thanks for having me & ill keep ya all posted on what their plans are for me, Thanks...Mike

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rabbits68's picture
Replies 4
Last reply 7/19/2017 - 5:07pm

I got the news this evening that the black lesion on my tonsil is melanoma. I'm not sure what this means for the Clinical Trial I am on but I will be traveling there Monday. It is time for a scan and another treatment. I expect we will make a decision based on what the scan shows. The beast just keeps rearing it's ugly head but I am determined to keep fighting back!

LisaG

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cammeronwall's picture
Replies 3
Last reply 7/20/2017 - 12:56pm

Hi,finally received my SLNB and WLE results back. The lymphnodes were clear and am now classified as state 2A instead of 3Acas they thought. Emory has been a wonderful choice for oncology. Is anyone else Stage 2A and if so, what has been your journey/ experiences thus far? I go for quarterly checks with my oncologist as well as dermatologist 

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Sharon93065's picture
Replies 16
Last reply 7/21/2017 - 10:28pm

Thank you for all of  your posts.  They have been so very helpful.  I have had two infusions of Opdivo/Yorvoy,  with two to go,only side effect is the rash/itching and tiredness.  TSH is down to .03 Dr said he would look at that after my next blood tests. Thank you for those that gave advise about thryoid medication.  And thank you for mentioning the brain fog...

If anyone has better solutions for the itching rash let me know.  I now take Allegra every morning.

the 24 hr seems to only work 8 but have to live with it.  I use aloe vera, coconut oil...the other day i used Trader Joes Tingle Tea Tree Oi, Peppermint, Eucalyptus body wash, i got wet in the shower, and put in all over my body thinking I would just leave it on 20 minutes.  I also saturated my hair with the same type of shampoo.  I was in heaven, i didn't wash off for 5 hours.  Then after shower i lather coconut oil all ofver my body.  Some days the rash flares up and i try to hard not to scratch, and some days it's like tiny dried up sores.  Mostly on my chest, neck, upper back.  At night when i take off my clothes i have to immediately put some oil on my underweat line etc.  I am rinsing my clothes twice, not dryer sheets, rinse.  And only cotton doesn't leave marks on my body.  I would wake up and my whole left side would be in hives from my night gown.  I'ts 60 cotton and 40 polyster.  So now I'm sleeping in 100% tee shirts until i buy  new nightwear.

Andy other suggestions?  I have dermatologist appt next week to see what he has to say.  Plus i haven't seen him since I have been diagonised with stage 4 metastic melanoma, lymph nodes, lung, back.

Good  news, I no longer feel the tumor on my back. 

 

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Nick C's picture
Replies 7
Last reply 7/15/2017 - 8:05pm
Replies by: Bubbles, Nick C, Ed Williams, Jubes, Anonymous, Sharon93065

This morning I met with my onc before my schedualed infusion. He informed me that my dosage of Keytuda has been increased to 200mg from 155mg. He told me the FDA new recommedaton is for all Keytruda (and Opdivo) to be this new standard dosage regardless of a patient's weight.

I have one more infuson before my next scan...hoping to be NED.

Hang in there my friends...we are making progress!


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jazztubs's picture
Replies 5
Last reply 7/15/2017 - 1:02pm
Replies by: Bubbles, jazztubs, betsyl

Hey All,

I'm looking for anyone out there that has had the Yervoy / Keytruda experience who might also have Crohns disease.  I'm fairly healthy, in my early 40's, with Stage 4 disease.  Lived through IL-2 with 100% response, but then had brain mets a year later, plus a tumor in my intestine.  I"ve been approaching surgically, which has been good, but now time to be pro-active after colon surgery and 3 craniotomys.  Keytruda is recommended, but the docs think the combo with Yervoy is a best-bet.  Problem is I have a history with Crohns, and the doctors are very aprehensive about this one aspect: however, the Crohns as been "sleeping" for about 10 years.  No symptoms, and no treatment for it since surgery to remove strictured intestine in 2007.  So, Crohns doesn't seem to be active.  No adverse reaction to IL-2 or Interferon beyond normal side effects and didn't trigger Crohns

This combo is the best bet, but the potential side effects of Yervoy could be detrimental... Keytruda alone may be fine, but we don't know long-term how fine it will be.

Just looking for experiences with this combo, and especially if someone has Crohns and took the plunge (or had a doctor allowing the plunge).

Benjamin

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HEGCWM's picture
Replies 3
Last reply 7/14/2017 - 8:20pm
Replies by: HEGCWM, sister of patient, Anonymous

saw PA last week ans asked about adjvuent terapy now that they can treat BRAF negative with optivo etc. Was tod it was no help since surgery as 2 years ago and no relapse. stage 3 micro metistatic, full node removal right axila.

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