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.

Expand/ Collapse Topic
 
Replies By
View Topic

A month ago I had a pet scan that showed concers with my lungs and in the pelvic region. We didn't discuss the pelvic concerns much becuase of the concerns with the lungs (had a bioposy- turns out I have a fungal infection). Now I'm feeling concerned and uneducated at what's next.

Results just posted. What will the next steps be? Bioposy of the cysts? 

 

US PELVIC COMPLETE NON OB

INDICATION:
Adnexal mass suspected, initial exam,Other intra-abdominal and pelvic swelling,
mass and lump. Focus of metabolic activity within the right hemipelvis seen on
prior PET-CT in the region of the right ovary.

TECHNIQUE:
Two dimensional trans abdominal and transvaginal ultrasound performed.

COMPARISON:
PET-CT dated 02/19/2019

FINDINGS:
The uterus is retroverted and heterogeneous in echotexture. Multiple
hypoechoic masses are seen within the uterus consistent with fibroids. The
largest is in the left uterine body measuring 3.9 x 3.4 x 3 cm, the largest
involving the right uterine body measures 3.5 x 2.4 x 2.7 cm. An intrauterine
device is seen within the endometrial canal. Endometrial canal thickness is
within normal limits measuring 6-8 mm. The right ovary is normal in appearance
measuring 4.1 x 2.4 x 3.8 cm and contains anechoic cysts measuring 2.5 x 2.4 x
2.2 cm and 1.9 x 1.8 x 1.8 cm. The left ovary measures 2.2 x 1.2 x 1.9 cm.
There is no free fluid within the cul-de-sac. Flow is seen within both ovaries
on color Doppler and spectral waveform analysis.

IMPRESSION:
1. There are multiple right ovarian cysts, the largest measuring 2.5 x 2.4 x
2.2 cm. No solid lesions or right adnexal masses are seen.
2. Leiomyomatous uterus.
3. An intrauterine device is seen within the endometrial canal.

Nicole C
3a

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 3/24/2019 - 12:54am

Hi

I’ve lead an active outdoor life up until now, and am looking for ways to continue that as much as possible.  I’m looking at daily and active sunscreen, UPF clothing and hat practices I can adopt (e.g. water activities before 10AM or after 3:30 PM).  

Only I can turn a cancer diagnosis into a shopping activity   :)

i couldn’t find recommendations for protection on this site   Am I missing it?

i found this on skin cancer.org

https://www.skincancer.org/products

You can select sunscreen or clothing etc and look for recommendations   Does the group think this is a good resource? 

Do you have recommendations for clothing that’s breathable?  Their suggestions?

 

Lucy

Login or register to post replies.

Gene_S's picture
Replies 1
Last reply 3/23/2019 - 8:10am
Replies by: Bubbles

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

Nympha's picture
Replies 4
Last reply 3/23/2019 - 2:59pm

Dear all,
I would like to update my father's (67y.o.)story.
He was diagnosed in 04/2018, primary removed in 05/2018 with results : nodular type, III C stage, breslow 2,2 mm, clark IV, Ulcerated, 2 sentinel nodes positive.
Reocurence in 10/2018, two nodules arround scar, growing really very fast(tennis balls in final) with more and more mets in skin.
He got imunotherapy (keytruda/ pembrolizumab) in 11/2018
After 5 rounds no results. Tumors grew very fast, and made more and more metastatic balls ( more than 40!!) arround scar from chest to knee (primary located on abdomen)
We started to be absolutely desperate seeing him suffer so much.
He was not able to walk or sit anymore.. Was in terrific pain.. No medicament helped..
He went to hospital in 02/2019. Ct results showed keytruda failed, and he has many small nodules in lungs..
We thought he will die there.. Was not able to speak.. Morphine didn't work, he was in constant horrible pain.. Every night.. I woke up, with terrifying feeling I am loosing him.. And that I am so *** helpless! So full of *** feeling I failed!!

Onkologist visited him in hospital and after some tests decided to change his treatment to Tafinlar/Mekinist.. Cos they found he is BRAF positive..
And the mirracle came.. Finally!!!

My father started to walk, his tumors on skin reduced and shrinked more than 50%! His skin starting to look so healthy and perfect.. Balls are dissapearing everyday.. He has only few of them now!! He speak again, he is in sooo wonderful positive mood. More positive than ever.. He stand up from bed and walk, exercise a little bit to get fit.. Does some small housework..
I love him so much and my heart is dancing like never!

This is one of my precious moments in my life.. To see his smile again.. He is without pain.. I can't believe it..
Hope this treatment will last very long time.. (I know it's very disputable) I pray for it everyday..

I do not have any questions.. Just would like to share our story.. To give hope maybe.. I like reading sories here, they give me so much hope and strenght... Thank you all for sharing and helping ppl..

(sry 4 my english :-) )

Login or register to post replies.

Newmanbell's picture
Replies 1
Last reply 3/22/2019 - 4:41pm
Replies by: Hukill

Hi all,

My husband is Stage 3B and has been Opdivo for 1.5 years with relatively good luck.  Just fatigue which he combats every 3 days with one 5 mg of prednisone.  He was just went into Septic Shock (talk about scary...) a few nights ago.  They feel the infection is from pneumonia in his right lung, but I did read sepsis is brought on by cancer patients too.  Anyone experience this?  Full recovery?  I am to pick him up from the hospital tonight and worried the antibiotic won't take care of this business.... his Opdivo infusions are put on hold for a few weeks.  Thank you in advance for your responses.

Donna Newman

Login or register to post replies.

DZnDef's picture
Replies 3
Last reply 3/22/2019 - 1:35pm

Hi all,

In an unrelated thread, I learned that at least three of us have Meneires in addition to melanoma.  So I thought I’d take a very un scientific poll and see if there are others.  Meneires is pretty rare so it might warrant some looking in to by the scientific community if a statistically significant number of  people with Meneires also have melanoma.  Maybe we have biological similarities that might point towards a particular treatment.  Who knows.

I’ve had bilateral Menieres for 23 years (starting age thirty).

I’ve had Stage IV melanoma for six and a half years.

Please chime in if you’ve been diagnosed with both diseases.

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

Login or register to post replies.

sister of patient's picture
Replies 5
Last reply 3/22/2019 - 10:26am

I learned about this amazing man, Mr. Leland Fay, right here on this board, became an instant "fan" and went back to his site often. Was delighted to go there today to find his latest post:

http://98braintumors.com/2019/02/to-hair-and-back/

Newcomer or not, brain mets or not, whatever stage you're at, I urge you to read about him!!

Best wishes to all!

Barb

Login or register to post replies.

Happygal's picture
Replies 5
Last reply 3/22/2019 - 3:50pm

Hi there. Monday I go to the 4th of 4 treatments of this.  I have had pretty good luck with not much side effects, it makes me very tired and in the 3rd week, I have a fever and chills for a few days, then I feel great for the last few days before I get ready to get another infusion.  I will have a CT scan in early April to see how the infusions are going, I am praying it will be positive as I was diagnosed Stage 4 metastatic in Dec right after I finished my year of Opdivoso it came back during treatment.  Thank you for listening, 

Tyais

Login or register to post replies.

anniemac's picture
Replies 6
Last reply 3/23/2019 - 7:23am
Replies by: anniemac, Jamie1960, Anonymous, ed williams

Thanks everyone for being so supportive.  

My doctor office sent biopsy results.  Working through them right now.  Made appointment for Surgeon on April 1. 

Learning a lot 

Breslow thickness 2.8mm 

Clark's III - IV

Ulceration present 

Periphereal and Deep margins uninvolved. 

Mitopic Rate - 6 per mm 

Statelltosis - Lymphovascular invasion - neurotropism -  Tumor regression all not identified. 

Tumor Infiltrating Lymphocytes - Present - not brisk 

pT3b (aac) 

Feeling a bit anxious but calm enough to get through the next week or so. It is a great comfort to read through the board.  

Knowledge is power !!

Annie

 

 

 

Login or register to post replies.

sharonlynn210's picture
Replies 4
Last reply 3/23/2019 - 5:09am
Replies by: CindyJ, cjm22, sharonlynn210

My son(3c) had three lung nodules 2mm,3mm,4mm.He has just finished his year of Keytruda.We have been watching them for a year now.The last scan showed 2 nodules now 3mm and 4 mm.No mention of the 2mm so I suppose it is gone now.I read alot of post about dead tumors.They have remained stable for a year.Will we always have to worry or is it possible these nodules are dead now.He is only 19 and his scans have been perfect except for these damn lung nodules:( The doctor tells me not to worry but I can't help but worry down the road they start growing.

Sharon

Login or register to post replies.

Scooby123's picture
Replies 15
Last reply 3/23/2019 - 10:04pm

Hi all, been to have my 3 week review and bloods today. Treatment 25 of pembro Monday. Pleased to say all clear pray to God.
Thanks guys
SCOOBY❤

Login or register to post replies.

cjm22's picture
Replies 6
Last reply 3/23/2019 - 7:54pm

We met with our oncologist to talk about my husband's bone marrow biopsy results and lots of recent blood work! He has two serious but normal immunotherapy side effects and one crazy rare side effect. End result is, of course, high-dose steroids (and also beta blockers to lower his racing heart rate). But I thought I'd put down these side effects here since I hadn't seen the bone marrow failure one on MPIP when I searched. If somebody else someday faces this, hopefully they will find this post.

1. Hyperthyroidism. Believed to be causing the fatigue and racing heart. Beta blockers to lower heart rate. Also a referral to an endocrinologist. This just popped up this week in the blood work.

2. Liver inflammation/hepatitis. Being treated with high-dose prednisone over the next two weeks. Also a referral to a liver specialist.

3. Panhypoplasia/aplastic anemia (bone marrow failure). This is a really rare side effect. Only a couple case studies of 3-4 patients who've developed this. But of course my husband got it! And he was even on low-dose ipi! The hope is that the high-dose prednisone and no more immunotherapy will resolve this. But he'll be getting weekly blood work as well as transfusions if necessary. If the blood counts don't stabilize or improve, our oncologist has already made a blood specialist aware of my husband's case and they'll send my husband to the blood specialist for more treatment. This could be due to the immune system 'attacking' the bone marrow, or possibly the liver inflammation is causing it.

My husband has also recenty started to hear ringing and lose some hearing in his right ear. This preceded his original diagnosis of a 3 cm brain tumour. So he's getting another MRI next week to check on his brain (he had one about a month and a half ago).

In the meantime he has lost three pounds in a week and is very sleepy. I hope the prednisone works its magic on him and also that the MRI next week shows some benign or immunotherapy-related reason for the hearing loss, and not another growing or new tumour.

Login or register to post replies.

bdginmo's picture
Replies 4
Last reply 3/21/2019 - 2:42pm

First time poster here...

My sister-in-law was diagnosed with melanoma stage 1A on the face with a depth of 0.5m in Novemeber of 2017. At that time margins were clear and she was considered to be at a very low risk of recurrence.

Fast forward to March of 2019 she woke with headaches and blurred vision and, with a series of rapid emergency room visits and appointments, she was diagnosed with metastatic melanoma of the brain and lungs. There are at least 20 lesions in the brain and 5 in the lungs.

We are all very shocked by what has just happened in the last couple of weeks. She is already consulting with the Mayo Clinic. We are waiting on the BRAF marker results. Though, based on updated information available as of this morning we think it is BRAF positive, but need confirmation from the doctor first. Follow up is scheduled for March 25th.

Any advice would be welcome. Thanks!

Login or register to post replies.

anniemac's picture
Replies 11
Last reply 3/21/2019 - 11:27am

Please help me understand. 

I have had a nodule on my leg for months.  It was removed and sent for biopsy.   The Doctor called yesterday and said it it melanoma.  After being on the internet all night I found you guys.  The doctor said it was 2.8mm and is sending me to an oncologist.  Recommends SNLB and something about cutting with wide margins.  

My question is what does 2.8mm mean.  I understand there is a scale but don't understand where the depth measurement came from.  That is - is it surface of my skin upward or downward.  I am not sure if I asked the question correctly.  Some insight would relieve anxiety.  

Thanks 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 5
Last reply 3/20/2019 - 9:49am
Replies by: jrtufo, DZnDef, marta010, swalters1038, Anonymous

My husband is having pretty awful Braf/Mek side effects that include vomitting, Rigors, temp, diarrhea, lethargy accompanied by elevated liver enzymes and C reactive protein.. My question is, Is this just a matter of enduring until he can no longer tolerate and then have a break or when is the time to say well this is enough of this particular therapy? Anyone have any experiences? We know this therapy has given us a good result so far and feel we need to keep pushing through the side efects but obviously it takes its toll on the body and is exhausting for us both. I do feel for anyone going through this alone.

 

Login or register to post replies.

Pages