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

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".

Login or register to post replies.

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!

Login or register to post replies.

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

Login or register to post replies.

Jan in OC's picture
Replies 7
Last reply 8/12/2011 - 3:23pm

Well, we made it to Houston...staying in a hotel and all our stuff is on the U-haul in the parking lot!!  Evidently we arrived at the busiest time for moving and have not found a place to rent yet.  Was hoping to get it done before Dirk's MD Anderson visits...oh well....I'm sure we will have a home soon!

I have to say, our experience at MD is light years different from UCLA.  It used to take weeks to get an appointment for any tests there.  

We went in yesterday morning, saw Dr. "Papa", and in the afternoon went to get an MRI.  Got the call today,  tomorrow they have scheduled ECHO, Complete Pulmonary Function Test, and CT.  

Friday, its back to meet a Dr in targeted therapy and Dr Papa again!!  Then we will decide which treatment plan to go with.  I even met our Patient Advocate and and spoke to the Social Worker yesterday. Never spoke to anyone at our last place.  

We are still in a washout period from the E-7080, so it seems like new spots appear every day.  Dirk gets tired easily, but is very excited about the team approach and liked Dr. Papadoupolis!!  We are hoping for good things.

Jan (formerly in OC, now a texan, LOL), wife to Dirk

Login or register to post replies.

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

Login or register to post replies.

Lisa13's picture
Replies 6
Last reply 8/12/2011 - 12:54pm

Tomorrow is my first day of ipi (yervoy).  I'm a little nervous about potential symptoms, but other than that, I'm hoping and praying that this treatment will work for me. It's my birthday on Saturday, so that has to bring me some kind of luck :)

I have a busy month ahead of me - my birthday, a wedding to go to, moving into a house - all celebratory things which has been keeping my mind very busy through all this nonsense.   As much as I want to have symptoms to feel like this might be working, I hope it doesn't prevent me from enjoying all these wonderful things.

Prayers and Positive Thoughts to you all!

Lisa

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

Login or register to post replies.

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

Login or register to post replies.

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!!

Login or register to post replies.

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

Login or register to post replies.

tricialeigh44's picture
Replies 4
Last reply 8/11/2011 - 10:07pm

My Mom has finished 3 rounds of IL2 in Buffalo and is now moving on to IPI. I am just wondering if we can somehow pool all of the melonama treatments available in Canada vs the US. What have been the most effective treatments.

My mum has stage 4 melanoma that has not spread past her lungs.

Thanks in advance

Tricia

Login or register to post replies.

nicoli's picture
Replies 12
Last reply 8/11/2011 - 9:56pm

I am NED as of March, when I had my last surgery.

This past week and a half I've had bronchitis and lots of coughing. Then came the neck pains. Fairly painful shooting pains in my glands behind my left ear and jawline.  The right side of my neck had the lymph nodes removed in 2010 and I have had no problems with the left side of my neck. Until now. This was NOT muscle, NOT bone, what else could it be but glands? 

So I said, I will not freak, I will not freak. It could be related to the coughing. (Note: I have had bronchitis at least 15 times in my life and NEVER had any kind of neck pain). Not every ache and pain is the cancer returning. But I was freaked.

Told myself to wait until Monday and if the pains were still coming I would call the onc for an appointment.

WAHOOOOOOOOOOOOOOOOOO. The pain is gone as of yesterday afternoon, as is most of the cough!!!!!!!!!!

My next PET is end of this month. I can do this thing.

Nicki, Stage 3b

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

Login or register to post replies.

My dad's Dr told him he has Stage IV melanoma on his thigh. The lab staged it from a biopsy. I was under the impression that you needed a PET Scan or MRI to stage it correctly. Can he be accurately stage from a biopsy? He's scheduled to have it operated on in 2 weeks. He's 81 years old. Please help me to understand if this can be accurately staged this way, if you can. Thank You

Login or register to post replies.

MariaH's picture
Replies 5
Last reply 8/11/2011 - 9:26pm

Dave started radiation on 8/9 due to the size of the tumors in his chest.  He will do 10 days of it prior to IL-2 on 8/29.  Has anybody had radiation to this area, and if so, what were your side effects?  So far he has said it's a "piece of cake".  Other than being a little tired and not much of an appetite, he feels good.  I'm just wondering what to watch for.

Thanks!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 4
Last reply 8/11/2011 - 9:23pm

Ok - I know this is probably a dumb question and has been discussed before but I thought I'd ask.

Right now I have regular CT scans like most folks.  Things have been clear!  My ? would be would a CT scan pick up a melanoma tumor on the skin.  For example, if a mole was bad - would it pick it up?  I typically only have CT scan of chest, abdomin, pelvis.  My primary was on my back.  Or would I need a PET scan to pick up things like that?  what would I look for if I had sub q's?  Lots to get your head around with all of this! 

I know there is a size limit to what they can pick up.  I have a derm appt again in a few weeks so I suppose I can ask then.

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 8/11/2011 - 8:10pm
Replies by: Anonymous, hope4cure1

Hi,

One of the older post,stated Dr.O'day was coming back to Angeles clinic at the end of July.

Anyone have an update on his return?

 

Thanks

John

Login or register to post replies.

Pages