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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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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DeniseK's picture
Replies 15
Last reply 9/18/2011 - 10:02am

Hi Everyone!!

I'll be starting my Interferon on Monday 8/15.  They're putting in my PICC line on Saturday.  Kinda sux cuz I was gonna go to the lake and have a sort of going away party!!  :)  I'll be sure to keep it dry but not my tummy it will be nice and wet with some silver bullets!!  :) 

I'm not looking forward to this but I feel like I have to do it!! 

My new oncologist is super cool!  Never had a doctor hug me before!! 

Anyway I'll keep updating on how it's going!!

Denise  :)

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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NicOz's picture
Replies 7
Last reply 8/12/2011 - 12:21am

I'm not really comfortable posting this result, as it's not going to be considered great news by many, but information is information. I started in April 2011 on the study, and by July was experiencing return of nodules/subq's, so knew something (not good) was going on. The news from the last follow-up and consult was not surprising to me, and most of my anxiety leading up to it related to "Is there a plan B for me?"

Progression is beginning/imminent, but the trial team feel that (and they really left this decision of where to head completely in my hands) I'm still receiving some benefit from the drug in terms of the aggressivness of the disease(and expect this benefit to last for around another 4 weeks, possibly 8- long shot)), and while I'm enjoying such good QOL with Georgia, it was up to me as to whether I'd prefer to have a bit more of that QOL, or start on Yervoy immediately (well... more or less- after a quick bit of zapping from Bob- their suggestion) before undergoing a treatment which may (or may not) result in more serious side effects. They don't want me to start Yervoy with an obvious progression and increased tumour burden- they prefer me (as do I) to commence it with the smallest tumour burden possible... so now I get to do the juggle ("watch carefully, and wait)") Yes, leaving it to the patient is good in a way (as only I can rate my importance of, and degree of QOL), but it's a big call when you're relying on symptoms of progression to change your treatment (or timing) Sometimes things need to progress to a considerable degree before symptoms even appear... So I had to warn my GP of the possibility of irritating tests from me about miniscule issues- to which he responded while he here today when he dropped over, that I can text as much as I won't. It won't be a bother to him.

One of the lesions they removed last time in dermatology had the path come back as an SCC . So I had to have a wider margin removed. Of course it HAD to be the obvious one on the eyebrow- currently I look like constantly surprised on one side of the face :D At least it's the usual eye I have raised for various reasons- downside of that is, it's ouchy whenever I show any expression. I should have demanded botox for the other side to even it out :P  He tells me it will drop with time! It Needs to drop back in a BIG hurry. Should at least look better without the stitches hanging out of them. A bit... I hope! (I had 3 other shave biopsies too- they're being very cautious since the SCC path came back)

I read the reports from the scans which basically looked fine, but knew full well that scan reports for studies aren't necessarily as comprehensive as one done for standard care- they concentrate on their chosen target lesions, and if something falls within the bounds of their trial specific criteria (re:RECIST), they may simply choose not to mention in the actual report, as they aren't relevant to the trial. They also compare back to the baseline scans, and when you've shown over 50 mets on that, then everything under looks pretty in their book. I.e. a few popping up here or there is still considered stable. Same for extracranial subq's.

Hence why the trial team consider progression imminent, but are happy for me to remain on the study for the moment, at my own discretion, but with close monitoring by me and consultation with them.

Overall, I'm pretty happy with my decision. It maximises my QTG (Quality Time with Georgia) - always my main consideration.  I'm confident I've made the right choice for me, but there is trepidation that I will mess up the timing of the 'swap over' of treatment. But I'll just have to trust that the good judgement that has kept me hanging around for the past 3+ years, will continue (not to mention the luck involved :D).

Sometimes I think mel treatment is akin to using stepping stones to cross a raging torrent, constantly hoping researchers are far enough ahead of us to place the next stone in the right place, to keep us moving forward?

Another bonus is that the Yervoy will be provided as "compassionate use". And my previous, (THEY failed ME) chemo attempts, means I can swap treatment when I'm ready without having to take into account the time spent undergoing another chemo. AND they trust my GP enough to monitor for side effects, after their previous contact with him- so I won't be shafted onto yet another (pffft) visiting Onc, nor will I have to hang around in Sydney- they were deal breakers. Hooray- believe me, that was among the first things I wanted to discuss. He's been more proactive than 100% of Onc's I've had in the past 3+ years, until my most recent experiences with the main 2 involved with this study.

So I'm embarking on yet another new adventure- at least there is one to embark on, I reckon :D Meanwhile, roll on... it's "girl's night" with my baby tonight, so the rest of what's going on in life takes a big, fat back seat. As it should.

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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NYKaren's picture
Replies 3
Last reply 8/12/2011 - 9:43am
Replies by: NYKaren, triciad

Hi again,

Just got home from seeing Dr. Wolchuk.

PET showed no new activity except a tiny spot in my lymph node, which Dr. W thinks is the Ipi, especially since he didn't feel anything there upon exam.   He said he's seen people get much worse at week 12, where I am now, and respond completely by week 16.  Here's hoping.

I'm seeing Dr. Halpern Monday; he will biopsy one of the small pieces near my eye. (he's head or co-head of Melanoma service @ Sloan.

Dr. Shaha, the surgeon, is bringing my case to the "Head and Neck Surgery Board".  Normally they wouldn't hesitate to try to excise again, but the location is so difficult and also would entail a large graft--nothing left to stretch together!   

Dr. Halpern did say that if I don't respond that we should consider IL-2 (at Yale) or Chemo.  Of course I didn't write down what he said, but the Chemo would be a mix of 3 separate drugs.  He said that only a small percentage of people respond to IL-2, but those that do have amazing sustained results. 

Stay tuned, and thank you for the support,

karen

Don't Stop Believing

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