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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markd's picture
Replies 13
Last reply 6/19/2012 - 1:14pm
bruski1959's picture
Replies 6
Last reply 3/12/2012 - 9:19pm

Jackie had her 1st two Yervoy dosages on 3 week schedule, but started having intestinal side effects 10 days ago. For the first few days Immodium and clear liquids/bland diet seemed to be tolerable. Then nausea kicked in, and Jackie started dehydrating rapidly. A trip to the ER was necessary to rehdryate Jackie with IV fludis and anti-nausea meds via her port. Also, her potassium level was low, so she had some IV potassium. Got her stabilized and back home 5 hours later. Then she was put on high dose steroids to combat the now more frequent intestinal side effects. Jackie has had trouble resting and has had some confusion too. She was advised to take Benadryl in addition to strong sleep aid to help her rest. The Yervoy intestinal side effects subsided, but the side effects of the steroids have been troubling. Tomorrow at Jackie's oncology appointment we expect the steroids to start to be tapered off.

On another note, a friend of ours daughter has taken two Yervoy doses, and had to discontinue the Yervoy due to the side effects, and has remained on high dose steroids and bland diet. But the Yervoy has stimulated her immune system enough to shrink the melanoma tumors in her liver.

Not sure what the plan is yet, but for now Jackie's 3rd Yervoy dose originally scheduled for March 16th has been postponed. Will see what the oncologist recommends and what Jackie wants to do. She hasn't been herself at all these last 10 days, and I think it would be hard for her to make any decisions tomorrow. I think we will need to let her taper off the steroids a bit, get caught up on some rest, do her weekly blood tests, and take it from there.

We finally got the Explanation of Beneifts for the first Yervoy treatment. The charge was $36,000, the negotiated rate was a little over $22,000. Since Jackie has already met her deductible and 2012 annual maximum out of pocket, our cost was $0!

Appreciate any feedback anybody has on their experiences with Yervoy side effects, steroids side effects, stopping Yervoy treatment after 2 doses, and continuing on with 3rd Yervoy treatment.

These last 10 days have been challenging, to say the least.

Thanks,
Bruce and Jacie

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audgator's picture
Replies 1
Last reply 3/13/2012 - 2:04am
Replies by: LynnLuc

This may be a little far out, but has anyone on an anti-pd1 trial ever had a shot of cortisone for an unrelated orthopedic condition?

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Kimberly Duncan Watts's picture
Replies 5
Last reply 3/12/2012 - 3:54pm

Much to our dismay, while the YERVOY seems to have worked well on my subcues and abdominal lesions, it didn't quite get to the bowel. In a matter of 2 months following completion, I had emergency surgery Friday at 1 am to remove 20" of intestine. The good news is I'm alive. Had I waited, I wouldn't be posting this right now. And...obviously, it's GONE? Has this happened to anyone? Where the intestine turned inside itself so that the mets couldn't be seen by scan? They were having a hard time getting dye thru my veins.... Thanks for input. I am, quite frankly, sufficiently frightened.

I can do all things through Christ who strengthens me.

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I had to nap at 10:30 am this morning a few minutes after taking my 4 zelboraf pills.

feeling dizzy and a bit weak only 5 days after having started the treatment. 

is that normal? Does the fatigue wear off and one gets used to the medicine?

Or am I preparing an allergic reaction to the stuff (like I did to sorafenib)?

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WendyPam's picture
Replies 4
Last reply 3/11/2012 - 6:47pm

My Mom is on Yervoy reinduction and started having issues with diarrhea after her second infusion. It did get scary one of the days -  8x with blood and vomit. Dr. put her on the Prednisone and what a difference I see in her. She had become extremely depressed, her blood sugar level have been extremely high (over 300) and she can sleep all day. She is not herself at all!!!! We saw the Dr this past Tuesday and we told her that my Mom still had diarrhea 2x every morning, no blood and never past 10 am. (this dr is a sub for our dr that is out of town)  She said that was fine as long as no blood and no more then 2x. She is scheduled for infusion #3 this Tuesday.

Today my Mom didn't want to take the Prednisone and finally I told her we just can't stop without talkingwith the doctor. She has only been on it a week at 60mg every morning. I went and spoke to the local pharmacist in town to figure out if we could just stop or had to taper. He sent me home with papers to read. After google searching it looks like she hasn't been on it long enough that she would have to taper. We went down to 40 mg (2 pills) and tomorrow taking just 1- 20mg. (Our doctor is still away and the second doctor is away now - don't feel like dealing with an unkown doc that doesn't know us)

She hates the quality of life that she is dealing with right now and I have to respect her, but at the same time I have to fight for her. She told me that she doesn't want the 3 and 4th infusion if this is quality of life. This prednisone is driving her mental state down.

QUESTION::  Can we get her on Endtocort and treat the inflammation in the gut and not the Predisone that is treating the whole body and driving her blood sugar so high. She is on diabetic medication (one pill a day) Her diabetes is usually controlled by diet and prior to this she hadn't been on the medication in awhile.  Beside the fact that is makes her nauseous. 3 years of fighting this Melanoma and I have never seen her depressed like this! I would like to see her complete infusion 3 and 4. and start looking into anti-pd1 at Moffitt. What are your thought on Endtocort?

As always thank you so much for sharing your vast knowledge. It helps ease my worries..............

 

Wendy

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Kerri P's picture
Replies 11
Last reply 3/12/2012 - 7:35pm

Hi!
It's been a really long time since I have visited this board, but it was so helpful to me in the first couple of years after my diagnosis. I met some great people through here that I still keep in touch through Facebook. I just wanted to come back and share my updated story for those who need some support and optimism. I was diagnosed in May 2007 with an 11 mm tumor on my arm. The melanoma had spread to a lymph node in my underarm and a lymph node in my neck. I endured a second surgery where more tissue was removed for clear margins and a lymph node dissection where 52 lymph nodes were removed. I completed nine months Interferon and have been on a 6 month scan schedule ever since. Last month I had my scans and remain NED!!!! I just want those of you out there to know that there is hope!!

Kerri Pierce
www.kerpie.blogspot.com

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willtolive's picture
Replies 3
Last reply 3/14/2012 - 11:30pm

Hi all

 

Just an update about my wife:

She begun ipi treatment March 11, 2011, the scans in June revealed that ipi had worked very well.

Here almost a year after, she is still NED. It is still unbelievable. To all you Warriors out there: keep fighting..!!!

I dont know, why ipi worked so well on my wife, but she had always been positive, even when it was worse, with hope and believe in her heart.

AND she went to a chinese doctor (who graduated in Beijing) and got acupuncture twice a week. Its impossible to say what makes you a responder, but I recommend the following, because it helped my wife. Maybe a combination got rid of the cancer?!

 

1) Stay positive (like himynameiskevin - a virtual lighttower for me and my family through 2011, all my hopes and prayers goes to you our fellow warrior)

2) Keep faith  that you someday will be NED.

3) Acupuncture, one or twice a week. Be sure that it is a original chinese doctor. Here in Europe, many try to learn the profession, but I think you have to be Chinese to really understand was goes on in your body, their knowledge about the bodybalance etc.

4) AVOID SUGAR! I know it´s hard to implement, but the craving only lasts a week or two, then your mind and body has written sugar off! Remember this: cancer cells gets nutrition from glycose/sugar. Cut sugar off and let the cancer cells starve to death! Many patients with cancer have a extraordinary desire for sugar, possibly related to the desire of the cancercells. Get the natural sugar from fruits instead. 

5) Excercise at least 3 times a week. Exercise is good for the immunesystem and is a part of preparing your body to fight the cancer. Besides it is good for your mind, and maybe you will loose weight as well.

 

Keep fighting all my friend

 

 

 

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Gene_S's picture
Replies 5
Last reply 3/13/2012 - 3:10am
Replies by: Gene_S, LynnLuc, kylez
Setback in research into cancer treatment
Marilynn Marchione, The Associated Press
07 March 2012 05:07
 

BOSTON - Scientists are reporting what could be very bad news for efforts to customize cancer treatment based on each person's genes.

They have discovered big differences from place to place in the same tumour as to which genes are active or mutated. They also found differences in the genetics of the main tumour and places where the cancer has spread.

This means that the single biopsies that doctors rely on to choose drugs are probably not giving a true view of the cancer's biology. It also means that treating cancer won't be as simple as many had hoped.

By analyzing tumours in unprecedented detail, "we're finding that the deeper you go, the more you find," said one study leader, Dr. Charles Swanton of the Cancer Research UK London Research Institute in England. "It's like going from a black-and-white television with four pixels to a colour television with thousands of pixels."

Yet the result is a fuzzier picture of how to treat the disease.

The study is reported in Thursday's New England Journal of Medicine.

It is a reality check for "overoptimism" in the field devoted to conquering cancer with new gene-targeting drugs, Dr. Dan Longo, a deputy editor at the journal, wrote in an editorial.

About 15 of these medicines are on the market now and hundreds more are in testing, but they have had only limited success. And the new study may help explain why.

The scientists used gene sequencing to a degree that has not been done before to study primary tumours and places where they spread in four patients with advanced kidney cancer. They found that two-thirds of gene mutations they detected were not present in all areas of the same tumour. They also were stunned to see different mutations in the same gene from one part of a tumour to another.

That means a single biopsy would reveal only a minority of mutations. Still, it's not clear whether doing more biopsies would improve accuracy, or how many or how often they should be done.

Although the study involved kidney cancer, independent experts said the results should apply to other cancers such as breast, lung and colon. And previous research suggests this is so.

"This is an important paper," said Dr. Gordon Mills, co-director of the Institute for Personalized Cancer Therapy at the University of Texas MD Anderson Cancer Center.

Doctors there have been offering genetic testing to patients for several years and have a database of results on about 4,000 tumour samples. So far, about 40 per cent of breast cancers have discrepancies between which genes are active in the main tumour and which ones are active where the cancer has spread, Mills said.

It costs $5,000 to $10,000 to do basic gene analysis of the main tumour, and about 10 times as much to do the kind of testing the scientists in the British study did, Mills said.

And if it were done, "we're going to find a lot of information that we don't know what to do about," such as when one biopsy suggests a certain mutation is driving the cancer and another biopsy suggests a different one is, he said.

It also takes precious time. Swanton said sequencing a patient's entire cancer genome took a very large computer four months. The amount of time required is dropping, but this type of personalized analysis is still years away from being available in the clinic, he said.

Yet the study shows that the single biopsy — "the cornerstone of personalized-medicine decisions" — is not enough, Longo wrote. And "the simple view of directing therapy on the basis of genetic tumour markers is probably too simple."

___

AP Medical Writer Maria Cheng in London contributed to this story.
 

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

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rbruce's picture
Replies 14
Last reply 3/19/2012 - 12:55am
Replies by: melmar, Anonymous, rbruce, boot2aboot, LynnLuc, audgator

just checking in to see if anyone has any results or comments to share from Merck's pd1 trial?  I start next week and would like to keep in touch with others n the trial.  Thanks, Robert

The circumstances of our lives have as much power as we choose to give them. David McNally

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/12/2012 - 6:51pm
Replies by: Anonymous, LynnLuc, MissJenn, Erinmay22, Janner

A couple of weeks ago I had a wide excision done on a mole on my back that was 1mm with clarks level IV.  The pathology report for the tissue around the mole was clear (thank god).  So now my surgeon says to wait about 6 months and get a PET scan done.

I was thinking about things and realised that a couple of months before I had the mole removed I had a swollen gland under my armpit that was swollen and painful for about a week and a half.  I had totally forgotten about that so didn't tell the doctor about it.  I didn't get a SNB done at the time as my doctor said it was no necessary for my level and did not affect my long term prognosis.

I realise swollen glands can be a sign of alot of things, like stress etc.  My friend had them on her neck and the doctor cut out a suspicious mole on her back thinking it was Melanoma because of the swollen glands that she still gets.  But luckily for her it was not that.

Should I call the doctor about this?  I have an appointment in 3 weeks time to see him again to check the area.  Thanks for your advice, I am now checking this forum all the time to educate myself. 

Also does anyone on this forum recommend a melanoma specialist in Brisbane Australia?  The doctor I am seeing is a surgeon but not a Melanoma specialist so I would like to swap my ongoing care to somewhere that specialises.

Thanks

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blairashley's picture
Replies 5
Last reply 3/12/2012 - 5:23pm

2.4mm on abdomen > Had wide-excision (clear margins!) and SLNB on Friday 2/24.  SLNB results are still not finalized.  Doc went over the following report with me on Tuesday... said the results weren't clear enough to make a diagnoses and they're running more tests. But -- I thought I'd put it out there and see if any of you had some insight?  Thanks! 

Sentinel node right axilla, biopsy:
One lymph node with S100-positive cellular aggregate of uncertain significance. Immunohistochemical stains of S-100, Melan-A, and HMB45 were performed on specimen B per the sentinel lymph node protocol. A single focus of S100-positive cells is present within a sinus immediately subjacent to the capsule on the initial level of the right axillary sentinel lymph node. This aggregate is not present in subsequent sections stained for HMB45 and the histiocytic marker CD-163.

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Terra's picture
Replies 5
Last reply 3/14/2012 - 11:34pm
Replies by: momof2kids, Lisa13, WendyPam

Does anyone have a number on the response rate of a reinduction of yervoy, I have read on mpip it is 40% but our doctor said 10%?

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Tim--MRF's picture
Replies 2
Last reply 3/8/2012 - 6:08pm

Last night's report on ipi and radiation set of a lot of activity, as seen from several threads below.  One person from the MPIP community had some specific questions and I was able to get some answers.  I thought this might be of interest to others here:

 

 

1.       How far out was the patient from the last dose of the ipi regimen?  (And was she on the standard approved protocol or some other dose/frequency program?)  The patient was on a trial in which maintenance ipi was given every 12 weeks at 10 mg/kg. She was between 2 such maintenance doses when the radiation was done.

2.       What was the size of the tumor that was irradiated?About 5 cm.

3.       Any reason to think that radiation of several smaller tumors might have a similar effect? It certainly could.

I think it is important to remember that this is the story of one patient.  No-one knows yet if what happened with her is indicative of what will happen to a braoder group.  Having said that, the principle behind the report is consistent with other immunologic approaches.  A handful of companies are working on vaccines that involve tumor specific antigens, based on the same concept that these tumor proteins can stimulate an immune response against the tumor as a whole.  Some of those companies are already discussing doing trials combining their vaccine with ipi.

I get frustrated with media expanding a small positive result into a world changing event.  It may be such an event, but it may not be.  In the meantime I am quite sure that doctors across the country are being approached by ipi patients asking for radiation....  

Hopefully this is a true turning point.  Dr. Wolchok does good work, and Sloan Kettering has an excellent program, so it comes from a reputable source.

Tim--MRF

 

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My husband was in the clincial trial interferon vs. ipi.  He was able to get all four induction infusions.  About 10 days after his fourth infusion, he developed colitis from the ipi.  That landed him in the hospital for five days.  Last Friday, 25 days post ipi, he was hospitalized again for hepatoxicity.  His liver numbers are still up.  So far, this hospital stay is day seven and he is still inpatient.

He had CT scans on 2/24/12.  Those results have come back.  He now has spots on his spine and right pelvis.  They did a bone biopsy Tuesday on the right pelvis. We are still awaiting those results.

His oncologist is not recommending any further immunotherapy due to the reaction he has encountered with the ipi.  If the biopsy shows melanoma, (which I will be shocked if its not) she is saying chemotherapy.

In your experience, what drugs are we likely to see chemotherapy wise?

If it is melanoma again, that will move him to Stage 4 from Stage 3b.

I need your help to know what our next step is or should be.

We don't know how strong we are until being strong is the only choice we have.

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