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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grungle's picture
Replies 7
Last reply 8/16/2011 - 9:17am
Replies by: MichaelFL, jag, Cooper, FormerCaregiver, Anonymous

Hi all

My wife has scondary melanoma of her liver, primary originally ciliary body melanoma.  Laparoscopy in March showed it was melanoma, although she has also had breast cancer in the past. She is braf negative.She has multiple tumors in her liver, but  none elswwhere at the moment. Because it has been slow moving our onclogist has advised us to play waiting game befoe he put her on Dacarbazine.  He is very vague about the use of yervoy in Queensland. During her yearly check up with her opthamologist, he advised us to try and get her on yervoy asap, which means she has to have failed another chemo first, hence the reason we are going on Dce.

Our oncologist maintains no one in Queensland is administering yervoy .  I know peter mac is using it, i have contacted them a couple of times. Does anyone have any information on how,where we could get it in Queensland?  Also any idea if/when it goes on the PBS list what the a ball park cost figure might be. thanks.

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Anonymous's picture
Anonymous
Replies 0

Happy birthday from your secret admirer! Good luck with Yervoy!

P.S. I know your age!

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

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Hi all,

I probably posted on this bulletin about 2 months ago about my Mum.

Since then she has a full course of radiation on both the large tumour on the L4 of the spine as well as the spot at the top of the leg.

On Thursday (today is Saturday in Australia) she received her ct-scans. It has been about 6 weeks since the radiation and Mum decided to have her ct-scans early as she started getting a bit of pain back.

The scans were not good. Although they didn't reveal any extra spots, it appears the large tumour and the spot on the top of the leg have not been affected by the radiation at all. There may be an indication also that the tumour has grown slightly.

We're (being Mum, Dad and me) are going to the oncologist on Tuesday. Mum is feeling very negative at the moment which is absolutely heartbreaking for our family.

BRAF results came back negative....oncologist also has c-kit results but hasn't told us yet which is making us think that it's negative, so Gleevac is probably a no go.

So basically it's a non-skin related melanoma, no primary (unknown primary) with no c-kit or braf mutation.

Where to from here? Surgery is still not an option. Dad and I have desperately tried researching options and contacting researchers from the US, China (including Dana Faber etc.), and no-one has replied.

Feeling very desperate now. Does anyone have any suggestions? Your help would be incredibly appreciated.

Cheers from Australia,

Ashley

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lhaley's picture
Replies 5
Last reply 8/15/2011 - 1:46pm
Replies by: djpayn, jag, ValinMtl, King, triciad

I finished radiation today on my arm, it was aimed at the ulnar nerve to clean up where they could not get a margin from lymph node removal.  I was told that I would only have a little fatigue and would only be slightly pink.  Well, that didn't quite happen.  I'm exhausted and quite burnt.  The radiologist commented that I must have sensitive skin.  Yeah, I'm a redhead and pale!!!  Melanoma.... hmmmm   After day 4 when I was already blistering and after talking to Debbie from Va I questioned and they stopped the bolus.

Anyway, my question is those that have had the severe fatigue, how long does it last?  I assume that I would start bit by bit getting better quickly.  The tech commented that it could take quite some time since the radiation continues working for 90 days.   

Also, she took me off of my vitamin E and D before treatment. I did forget when I saw her yesterday to ask when I could get back on..  When I asked the tech today that's when she told me that the rad. continues working for 90 days so she wasn't sure. I was advised to call on Monday to ask (appointment was late this afternoon).  Any thoughts?  From what I read online those vitamins are not advised during radiation because of something with the free radicals. 

I was treated locally since I couldn't go the distance to Charlotte everyday. I am used to questioning what is going on with my health plan but they have not liked all of my questions.  I guess they are used to patients that just trust their word. 

I've been so grumpy and emotional that I'm even bothering myself! Can't imagine what my poor hubby has been feeling.  I am excited though to be finished!!  Now just hope that it can help to save the nerve.

Linda

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nickmac56's picture
Replies 4
Last reply 8/13/2011 - 7:34pm
Replies by: nickmac56, MaryBZ, BethA, lhaley

My wife had her treatment - it lasted only 49 minutes. We got there at 6am and didn't get out until noon. It certainly is more painful than Cyberknife. She got 4 injections of local anesthetic at the sites where the head support frame is attached. She is pretty stoic and has a high pain tolerance; she's had a ton of sub-q tumor surgeries under local. But she said this was the worst. The spot where the pins will go gets filled up with the anesthetic fluid - quite pronounced. Once it got working after 20 seconds she had no pain at all the rest of the time. They attach the frame with four pins and they tighten them all the way to the skull. They pulled out an allen wrench and the neurologist really reefed on it - I was surprised at how tight they got it. 

They gave her an Atavin - sedative - and that made her pretty sleepy throughout the entire procedure. After the head frame attachment it was a piece of cake - get the MRI - wait 90 minutes while they do the gamma radiation plan, then the treatment itself. She's been napping all day in recovery, but otherwise in pretty good shape.

Given the choice she would do the Cyberknife again in a hearbeat over Gammaknife. 

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Lisa13's picture
Replies 3
Last reply 8/13/2011 - 2:46am

When I spoke to my Dr about my CT scan taken July 22nd, he said other than small lung mets, I had no other spead. After receiving copies of my CT, I'm reading the following:

"Interval development of an infracarinal lymh node, short axis is 1.2cm. Otherwise, no new mediastinal or hilar lymphadenopathy"

and then the impression is:

"Further growth of the previously seen lung mets as well as development of a mediastinal lymph node metastasis"

That to me is a lymph node now suggesting spread does it not?  I wonder why my Dr didn't mention this to me? Maybe it's all relative cause I have lung mets or maybe he's not concerned. Just seems strange especially when I asked him if it's spread anywhere else and he said "no".  It also seems strange how they are assuming lymph node metastasis when they havn't biopsied anything. Just saying...............

 

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Bruce in NH's picture
Replies 7
Last reply 8/15/2011 - 1:10pm

Good Morning from New hampshire!

As a short background, I am in my 10th year battling melanoma and I continue to win this battle! There is no giving up in my heart! Setbacks are a part of life. It's how you deal with them that makes the difference.

In the process of gaining entry into the new t-cell targeted therapy clinical trials at NIH in Bethesda, MD, I learned I had multiple melanoma metastases in the brain - more than 10. I just completed a 10 session Whole Brain Radiation Treatment (WBRT) program at the Nashua (NH) Regional Cancer Center on Wednesday. I will have a followup brain MRI on either August 25th or 29th, depending on the facility I choose. I will know by August 31st whether I am a candidate for targeted radiation to zap any remaining metastases (SRS). I remain confident and hopeful that I can proceed with SRS, get the met count to 3 or less and get started at NIH as previously planned.

If you have any specific questions you would like to ask me regarding my experiance in dealing with WBRT in confidence, you are welcome to email me at nelsonbd45@gmail.com. Enjoy your day, take one day at a time and be thankful we have such great technology, medications and physicians to help us through this.

Bruce

 

Life is a journey, not a destination. Enjoy every minute of it with family, friends, and with others who may be ill and fighting melanoma.

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TracyLee's picture
Replies 11
Last reply 8/13/2011 - 8:01am

Hi y'all,

I began BRAF this past Monday, after completing 4 rounds of ipi.

I am having an excellent BRAF response, already!

Neck nodes are down at least 1/3, if not 1/2.

Lumps/painful bumps on scalp - much smaller, flattening out.

Just wanted to post some happy news to encourage everyone out there.

Always keep trying, never give up.

God is SO good!

Woo hoo, posse up, we are kicking it to the curb!

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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It's kind of going from bad to worse for my wife. Today she goes in for Gammaknife treatment of the three new brain tumors. Should be a piece of cake and beats a craniotomy (which she has had before). But earlier in the week she felt a pain in her tailbone area, so we squeezed in a visit with our oncologist and he arranged a CT scan (which occurred yesterday) and bone scan (to take place Monda). He called last night to tell us that in fact the CT scan had found a tumor at the tailbone area (soft tissue) so indeed there was a source of her pain - but that it could be treated with radiation. He then went on to tell me that it appeared there was evidence of cancer in her spinal column. and that was not treatable. He wanted her to go ahead with the bone scan and gammaknife and we go in to see him and discuss it more thoroughly on Tuesday when he has both the bone scan and CT results and he can show us pictures and discuss what we can treat and what we can't.

Obviously untreatable involvement to the spinal column does not sound good in any way, shape or form. I can't find anything much of help online about what that means in terms of symptom progression  - other than pain adn eventual death. Anyone else have this or have a loved one who has had it in the spinal column? Are symptoms associated with location? or once it's in the column and it travels and grows it is just a matter of time before it shuts down vital functions. I also assume it means it's a highway to the brain and we can probably expect more there. I know her life expectancy just got very short, but knowing what to expect in terms of symptoms and progression would be very helpful as we assess treatment options.  Thanks, 

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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MariaH's picture
Replies 9
Last reply 8/12/2011 - 5:21pm

As I mentioned previously, Dave went down to NIH and did not qualify for their TIL study.  However, they did test him for HLA - which I know was to see if he qualified for the ESO and MAGE trials.  However, I don't understand what purpose HLA has in melanoma treatment.  I know for the ESO and MAGE trials, they extracted the white blood cells from your blood stream, which is different then the TIL study (they use actual tumor).  He tested negative, which the nurse said is just "genetics".  But I am curious - what role does it play?

Thank you, as always....

Maria

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bekahboo82's picture
Replies 5
Last reply 8/12/2011 - 9:20am

Hi there everyone.  I have been following the board for a few months and have been impressed with the wealth of information and knowledge.  I have been afraid to post anything because I have "in situ" disease and don't feel like it's my place to ask questions when there are so many people here with real problems.  But I have mustered the courage to ask a few questions as everyone seems to be so open and willing to help.  So here goes.

As I stated above, I was diagnosed with Melanoma in situ (Mis) Sept. 2009.  The path from the shave biopsy showed the lesion extending to the lateral margin.  I was treated with a WLE and the path came back as "scar and fibrosis with no evidence of residual neoplasm."  I now see my Derm every 6 months for skin checks.  Should I be satisfied with skin checks or should I request a PET/CT scan "just to be sure?"  I have also heard talk of "mitotic rate" of which my path report didnt address.  It also didn't talk about Breslow depth either.  And I am asuming Clark level I since it was in situ.  Is there not mitotic rate or Breslow depth with in situ disease?  I am sorry if these are dumb questions.  I am just trying to get a grip on the whole thing (still 2 years later none-the-less) and I want to do everything I can to catch these early if I am prone to them.  I am 29 years old and plan to be dealing with this for a long, long time.  Thanks to everyone who can offer any answers/advice!!

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Anonymous's picture
Replies 3
Last reply 8/15/2011 - 1:48pm

Jim or anyone with  knowledge about aldara,

Jim,you mentioned in a previous post:

"Imiquimod also has antitumor activity, which might stem from the drug’s ability to stimulate a cell-mediated immune response. Application of imiquimod also leads to the release of IL-12, tumor necrosis factor α, and interferon α, which inhibit angiogenesis and increase cytotoxic T cells and natural killer cells.

Imiquimod also up-regulates IL-2, which down-regulates IL-10, thus reversing the suppression of antitumor Tcells.                                                      

You can apply the cream to your  face to stimulate the local immune system at the point of contact.  "   

       Best regards,                              

Jimmy B   

**********************8     

I have heard of aldara and I have the following questions about aldara?

Does aldara work on Subq's (lumps) "beneath" the skin or just "skin" cutaneous based melanoma.

I have a small lump under my skin but the lump is poking through my skin. Would aldara be effective on my subq lump if I rubbed  aldara into the lump?? There is no melanoma color on the top of the lump...just skin color.

Thanks for your help.

Mary

                                                                                   

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So here's the update...thusfar. My dad has a superficial malignant spindle cell carcinoma invasive to Level IV. He's scheduled for a WLE Aug 24th & they'll do a SNB then, too. I was told this is a spreading type of cancer so now my question is, Should the surgery date be moved up??? They said that after the SNB and WLE they will send the biopsy to the Mayo Clinic. If need be the case they will schedule a full body PET Scan depending on the results, and he will then have to meet with Oncology. Please tell me your thoughts on all this,

Thank you all again for all your help, knowledge & experience.

Worried Daughter

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PlantLady's picture
Replies 5
Last reply 8/15/2011 - 1:13pm
Replies by: jag, PlantLady, Gene_S, Anonymous

Hi all,

I have benefited from reading many posts here over the past couple of months, and I have found inspiration and encouragement.

My husband Ron was diagnosed in April with stage IV melanoma with mets in the lung, 2 ribs, and adrenal.  Since the only sign of a previous mole had been one that was "in situ" and removed in 2007, it was totally unexpected.  It was found during an XRay of the lung for another diagnostic purpose.  He was not symtomatic.  There is no outward sign of melanoma.

He is retired, age 71.  He's previously taken no drugs, has excellent bloodwork, and was very hale and hearty looking.  A picture of health, well, except for the Cancer!

Ron was referred to Dr. Lao at the University of Michigan for treatment.  He was started on Ipilimumab.  He had 2 treatments of Ipi, and started having diarrhea, fatigue and loss of appetite, loss of voice, and rapid weight loss (8 lbs in 2 wks).  His doctor put him on steroids (oral tabs, dexamethasone), plus Imodium, plus Prevacid to protect the stomach. 

One week after that, he still had diarrhea 6 times or so per day, PLUS now developed DROP FOOT!

The doctor took him off treatment.  We were pretty upset.  The doctor said maybe he can go back on it sometime down the road.  He's now down a total of about 30 pounds.  He looks skeletal, has a tough time walking because of the foot thing, and has a hoarse raspy voice (the ENT this week scoped him and said no tumors there, just muscle weakness). His skin just hangs, no muscle tone. Diarrhea continues. He continues to work out a bit, and to use the recumbant bike, but also sleeps a lot and is tired.  His appetite is huge, because ot the steroids, but it makes no difference in the weight.

He was supposed to be done with all 4 doses the end of Aug and scan the end of Sept., but instead he will be re-scanned the 21st and have the report with the doctor the 24th. 

Sorry this is so long, but I just wanted to share what the Ipi treatment has been like.  2 doses down, maybe more to go, maybe not.

Thanks for being there.

CJ

If you're going through hell, keep going. ~ Winston Churchill

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mombase's picture
Replies 9
Last reply 8/12/2011 - 5:28pm

I had a sleepless night last night as I mentally prepared for my appointment with oncology this morning to discuss systemic treatment options since I had decided not to proceed with the Whole Brain Radiation Therapy. I was very pleasantly surprised to be seen by the head oncologist, Dr. Rajappa. He was so awesome and had all of the qualities I hoped a great oncologist would have, i.e., thoughtful, smart, engaging, optimistic, calm,...everything!  We decided that I would have a new baseline body and brain MRI/PET scan in the first week of September. I would then start either the new B-RAF drug (if I was positive for the B-RAF mutation and if it is approved by then, which it should be), or Yervoy if I was negative for B-RAF mutation, somewhere around the middle to end of September.

Dr. Rajappa made me feel so confident and hopeful with this plan, regardless of which one was followed. He was going to call pathology at David Grant Hospital to find out if the B-RAF results were in yet, and then he said I would be called immediately when he found out. I was on the light rail on the way home when the call came in...I am positive for the B-RAF mutation!! The people on the light rail must have thought I was crazy...I was crying and doing the Happy Dance at the same time!! I am so grateful and saddened at the same time for the people whose names I recognize now, and who found out that they were negative.

The good news now is that U of Penn researchers just discovered a way to make our good T-cells attack cancer cells and then multiply instead of dying off. This was tried with a few leukemia patients with outstanding results. Now the trials will be expanded to larger samples and different types of cancers.

The bottom line is...the cure for cancer is seriously right around the corner!!

Getter done!

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