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.

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http://www.examiner.com/article/ucla-researchers-increase-survival-among...
UCLA researchers increase survival among melanoma patients
February 13, 2014

Los Angeles, with its Sunbelt location, offers many advantages; however, a disadvantage of our sunny clime is an increased risk of skin cancer, including deadly melanomas. On February 13, UCLA researchers published a study in The New England Journal of Medicine that reported on their progress regarding reducing the spread (metastasis) of melanomas.

A long-term research project was begun in 2001 by researchers at UCLA’s Jonsson Comprehensive Cancer Center. The study involved lymphatic mapping and sentinel-node biopsy, techniques that could detect the early metastasis of melanoma; to evaluate the success of the project, the subjects underwent 10 years of follow-up. (A sentinel node is a lymph node that is likely to contain cancerous cells at an early stage of metastasis.) They found that, compared to the traditional “watchful waiting” approach, their treatment protocol significantly increased the patients’ disease-free and melanoma-specific survival. The study authors noted that their findings offer a new standard for detecting melanoma metastasis to the lymph nodes because it allows physicians to quickly determine which patients actually have metastasis (approximately 20% in the study group). Thus, these patients may benefit from having their non-sentinel lymph nodes removed, while avoiding the surgery and its possible complications, as well as significant cost, for the many patients who probably will not benefit from surgery (approximately 80% of patients).

One of the significant findings of the study was that the thickness of the initial melanoma tumor correlated to the effectiveness of these treatments in managing metastases to lymph nodes and other areas. If patients with primary melanoma tumors of intermediate thickness (1.20 to 3.5 millimeters thick) undergo sentinel-node biopsies and then have immediate complete removal of the lymph nodes if the sentinel node contained cancer cells, they had an overall disease-free survival of 71.3% compared with 64.7% for those whose nodes were observed without sentinel biopsy. In addition, the investigators found that this group with cancer cells in their sentinel nodes had prolonged distant disease-free survival (survival without disease spread to distant organs such as the brain, lungs, or liver) and melanoma-specific survival (survival without development of additional metastases).

At their initial diagnosis, approximately 20% of melanoma patients have disease spread to nearby (regional) lymph nodes. Traditional treatment for these patients was surgical removal of the primary tumor and a rim of surrounding normal tissue; subsequently, the patients underwent a period of lymph node observation. If signs of cancer spread to the lymph nodes was found, the nodes were surgically removed. This spared 80% of the patients from unnecessary surgery; however, it was possibly too late to prevent the spread of the cancer in the 20% who had metastasis. An alternative treatment was to remove all patients’ lymph nodes, with the rationale that every patient was potentially at risk of metastasis.

Study leader Dr. Donald L. Morton and colleagues searched for and eventually perfected a method to specifically identify the 20% of patients whose tumors had already spread to the lymph nodes. Before cancer cells spread to the lymph nodes, they travel through the lymphatic system, first entering the lymph node most directly connected to the tumor (the sentinel lymph node). A combination of blue dye and radioactive tracer is injected into the tissues surrounding the primary tumor; this locates the lymphatic channels that lead to the first tumor-draining lymph node. The mixture follows the same lymphatic path used by the melanoma cells to spread to the sentinel node. The sentinel node is removed and microscopically evaluated in detail; the process allows detection of even a single melanoma cell. If tumor cells are not found in the sentinel node it is extremely unlikely that tumor will be present in other non-sentinel nodes; thus, further nodal surgery is deemed unnecessary. If cancer cells are present in the sentinel node, all the other lymph nodes in the nodal group are immediately removed.

The study authors note that their results confirm that for patients with intermediate thickness melanomas, early sentinel node biopsy reduces the risk of cancer recurring in the lymph nodes, and decreases the patients’ risk of dying from the disease. Some patients with thick primary tumors benefit from having their lymph nodes removed; however, the study findings suggest that the timing of the intervention is not as crucial for them as it is for patients with intermediate thickness primary tumors. The study group did not contain enough patients with thin melanomas to allow conclusions regarding their benefit from the technique. The researchers note that this group of patients will be a focus of a future study.

 

I'm me, not a statistic. Praying to not be one for years yet.

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Michelem's picture
Replies 9
Last reply 2/18/2014 - 1:27pm

My hubby has extensive mets throughout groin, liver, spleen, bones. He has just started ipi, but as I reading up on it I'm a bit unclear - if it works, is there a chance it may actually eliminate these mets? Or just arrest them? Or prevent from spreading further?

If it halts or slows things down for now, but the cancer comes back in future months or years - do we do the ipi again, unless something else has come out by then?  mm

MicheleM

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JerryfromFauq's picture
Replies 2
Last reply 2/14/2014 - 10:26am
Replies by: JerryfromFauq, joy_

Here are a couple of chains of posts relating to Lepto:  There is also info in Amy Griggs Busby posts on here and on her Carepages blog.

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

http://www.melanoma.org/find-support/patient-community/mpip-melanoma-pat...

I'm me, not a statistic. Praying to not be one for years yet.

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tickyloo's picture
Replies 10
Last reply 2/23/2014 - 7:08am
Replies by: Anonymous, tickyloo, JerryfromFauq, POW, Jahendry12, Janner

I took a telephone conversation from the dermo office this evening whilst making valentines day card with my 6 & 8 year old children. I went to see them after my breast surgeon ( who I was seeing for some confirmed masses and a 3cm axillary lymph node ) said shed like me to see one asap.

She called and said she had surprising news. Of the three biopsies she took two came back as malignant melanomas. Of course I had my children so I said, ok thank you. She said I am not sure you are registering what I am saying, I advised I was but I couldnt ask anything right now so perhaps she could tell me things .

 

This is what I wrote down --- I know she said more but I have no idea what.

 

Two malignant melanomas one of neck and one on toe ( next to nail bed which incidentally has looked odd - the nail I mean )

 

The one on the neck i THINK she said was.4mm and the toe .2mm but it could have been 4 & 2 BUT she said if its less than have a mm then the prognosis is better ... so I think she must have meant .4mm ....

 

I have an apointment for Friday 21st at 10am with an oncologist - a consultation . I have written the word excision.

 

Is this standard , to wait so long I mean .  Now things have sunk in and its late and of course ive looked it up and on the neck is a little yucky .

 

What should i do or think or ask . Honestly I cant think anything, my brain is numb ? Is this bad ? or is it ok ? or good ? Does the fact that its in the neck change the game ? Lordy I dont know how I can wait till 21st

 

Thank you

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Affordable Care Act Requires Insurers to Cover Clinical Trials
IMNG Medical Media, 2014 Feb 07, MA Otto
News February 12, 2014
 
Dr. Clifford Hudis

The Affordable Care Act now requires health insurance companies to cover routine costs for clinical trial participants, the American Society of Clinical Oncology reminded clinicians in educational materials about the provision it released Feb. 4.

The group is concerned, it said, because “the federal government has not yet issued regulations to guide implementation of the new law,” and, at least so far, has characterized it as a “self-implementing” statute that insurers are “expected to implement ... using a good faith, reasonable interpretation of the law.”

“While much of the statutory language is clear, in the absence of federal guidance, payers will likely vary on the legal interpretation of each element of the provision. It is likely that securing compliance with the law may require considerable negotiations with some insurers or health plans. There is no assurance that all parties will agree on the legal interpretation of each element of the provision,” the group said.

To help, the American Society of Clinical Oncology (ASCO) issued a detailed explanation of the measure, plus educational materials for patients and a form investigators can fill out to demonstrate that a trial and potential subject meet the law’s requirements.

“ASCO and other groups fought long and hard for this law requiring insurers nationwide to cover the routine costs of care for individuals participating in clinical trials,�� ASCO president Dr. Clifford Hudis noted in a statement.

The hope is to counter poor study enrollment, the main reason that about 20% of cancer trials are never completed, according to a study reported at the 2014 Genitourinary Cancers Symposium earlier this year. Sometimes patients simply can’t afford to participate, because “some health plans have denied coverage ... of routine costs that are offered as part of the clinical trial.” The new law might help patients afford clinical trial participation, the group said.

The law applies to plans newly issued or renewed after Jan. 1, 2014. Routine costs include all items and services that an insurance company would cover for a patient not enrolled in a clinical trial. Plans cannot prohibit participation in clinical trials; deny or limit coverage of routine patient costs for items and services furnished in connection with participation in a trial; or discriminate against an individual because they are enrolled in a trial.

The provision covers studies that are either federally funded, conducted under an Investigational New Drug Application, or exempt from an Investigational New Drug Application.

It does not apply to Medicaid plans, and payers are only required to cover routine costs delivered by out-of-network providers if out-of-network benefits are part of a patient’s insurance plan. “An insurer may attempt to deny coverage on the grounds that the service or item is ‘clearly inconsistent with the established standard of care.’ Providers may consider requesting that the insurers prove that the item or service is inconsistent with the standard of care,” ASCO noted.

 

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Michelem's picture
Replies 4
Last reply 2/15/2014 - 12:31pm
Replies by: Michelem, Bubbles, POW

A friend sent me a link to an article about this drug . . . it's a few years back so maybe it's nothng. LIke everyone else, I want to explore all options, so just wondering if this was something folks here know about and if it's something I should know about.  Thanks! 

http://www.ncbi.nlm.nih.gov/pubmed/18956140

MicheleM

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NYKaren's picture
Replies 15
Last reply 2/16/2014 - 8:35am

Hi all,

Yesterday I had MRI, saw onc and neurosurgeon. 

Dr. Pavlick saw regression on some of those pesky scalp mets, and my LDH went down a few more points. It had been quite high, went down a lot last month after starting MEK, and continued. So I'm stable.  I just love her. I never thought I'd like someone as much as Dr. Wolchuck, but they're both terrific. 

Then on to Dr. Kondziolka, my Neurosurgeon. All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month.   When he told me that 10, even 5 years ago, it would not have been possible to Gamma Knife so many mets, I asked if it was because advances have been made with the GN.  he said no, it's because of the advances in the ways they've learned to use it.  Not so long ago, it would have been WBR.   He was delighted at my affect; said I was sharp as a tack. Lol. 

Also, Dr. P was going to be speaking to Merck about expanded access; will let you know. 

Karen

Don't Stop Believing

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mary in Rhode Island's picture
Replies 7
Last reply 2/16/2014 - 4:53pm

I had a pet scan yesterday and all was ok.  After being on Z for 27 months I will be off it for 2 weeks due to that Q-T cardiac wave......getting way to far part.  We will evaluate in 2 weeks and see what is next.  I am thinking if the Q-T wave gets better ...maybe a lower dose of the Zelboraf.  If not we will proceed from there  I have been very fortunate with the Zelboraf  getting rid of the mel in my pancreas and other areas.  So       we will see what the future brings.  Thank goodness I had cardiograms every month.. Best wishes.

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ljhncj12345's picture
Replies 15
Last reply 2/15/2014 - 8:33pm

Larry had what we all thought was a good response to ipi after only 3 infusions in Febuary March and April 2013. We had 8 really good months. Scans 2 weeks ago showed 2 brain mets and one in his lower back by his intestines. doctors have been trying to get the braf + mek combo approved through insurance for two weeks now They will only approvve the Dabrafenib. Since he was intolerant to vemurafanib in 2012 ( he could only  take it for 3 weeks because of fevers and dehydration) his oncologist says he needs the mekinest with the Dabrafenib. 2 days ago he started having severe pain in his leg. X ray showed a 3 inch met in his femur. In 2 weeks time this disease has taken him from walking 3 miles a day to strggling to walk accross the room on cruthces. I just hope  can make it 3 more weeks until new insurance kicks in and we can see if they will approve meds.

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billie jo's picture
Replies 7
Last reply 2/15/2014 - 12:34pm

i recently have had melanoma removed from my pelvic area and now it is my lymph nodes in my groin i had a pet scan today but i am so worried noone is telling me anything and everything that i have read on the internet is not good i dont know what to do i cant eat sleep are anything worry thats it does anyone have any advice thank you billie jo

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JerryfromFauq's picture
Replies 2
Last reply 2/14/2014 - 1:05pm
Replies by: BrianP, JerryfromFauq

 A friend asked about this trial.  She was looking at it in Canada and would like to chat with someone that is envolved in the trial.   Her post: I was looking into a trial called TH302, but denied because I am transfusion dependent. Doesn't matter I didn't really want to do it, and I am doing TILS. And I would be the first in Canada to do it with Melanoma. My question is has anyone heard of this yet in the USA? Is a really cool concept for the drugs action.

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 0

Are people who've had one type of cancer more likely to also get other types of cancer, once your body has "allowed" cancer to happen - does that indicate it will fail in preventing tumors in general?

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kpcollins31's picture
Replies 3
Last reply 2/12/2014 - 10:01pm
Replies by: POW, Fen, JerryfromFauq

I thought it would be worthwhile to post about my experience with a recent bowel resection (2/4/2014) to help take away potential fear that someone about to go through something similar might have. I know I had anxiety not knowing what to expect and it helped to get feedback from some of you on this forum.

Pre-Admittance - I was admitted to the hospital the day prior to surgery for bloodwork and bowel prep. Bowel prep consists of drinking a gallon of a polyethylene glycol solution ("GoLytely")... one small cup at a time over several hours. This was not bad at first, but drinking a gallon of anything is tough. They gave me lemonade flavored Crystal Light to help as the solution itself tastes horrible. This was unpleasant, but I got through it.

Surgery - Day is mostly a blur. Prior to surgery, you get to hear all the scary disclosures about potential complications from the anesthesia. They gave me an epidural in the staging area for the OR... completely painless as they gave some medication through the IV prior. I remember going into the OR and being slid onto the operating table. As soon as my eyes began to open, I was in the recovery room and they wheeled me to my overnight room. I do not remember much... limited pain and a lot of sleep.

+1 Day - This was the toughest day. You become aware of the pain, but you have a pain button that you can push that administers pain meds through the epidural... it is effective. I also woke to realize I had a catheter which was my first experience with this and something I was really afraid of - truth be told, it was not too bad... it was not painful (they put it in while I was under). They tried to have me stand while measuring my blood pressure, but it dropped so low I almost passed out. Most of the day I spent sleeping.

+2 Days - Feeling a little better. Needed a helping hand to sit up in bed as it was too painful to do on my own... those pesky abdominals. Blood pressure starting to normalize. More time awake. Able to get up and move to a nearby chair with help.

+3 Days - This was an important day and I felt a lot better. They removed the catheter... uncomfortable experience but not painful. I felt comfortable enough to walk in the hallways to help stimulate the bowels. I walked a lot and it felt good to do it. By the end of the day, bowels showing signs of waking up... never been so happy to have gas. They moved me to a clear liquid diet.

+4 Days - Felt too good to be in the hospital and the nurses said I looked to good to be there. I was walking constantly in the hallways. Bowel function returned. They removed the epidural. They moved me to an unrestricted diet... I still used judgement and kept it really slow. They were watching for nausea and I had none.

+5 days - Released from the hospital. Feeling good but taking it slow.

The very next day, I felt comfortable enough to work from home. They sent me home with Percocet, but I have not needed to use many of them. Today (+8 days) I will likely not use any. Thinking back, I think the most painful part of the whole experience was removing the damn surgical tape... I got a free waxing. This experience also reminds me of the body's amazing ability to heal. Hope this is helpful to anyone about to go through this experience - feel free to PM me with questions.

Kevin

 

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Jahendry12's picture
Replies 17
Last reply 2/16/2014 - 2:03am

I'm sitting at Rush Univ Med Center while my husband is having a 3 month follow up CT.  If results are good, he will be 1 year NED with stage IV melanoma.  Hoping to report good news!

Saying my prayers and keeping the faith. 

Julie

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Interesting that this relationship has been known about since at least 2008.

http://www.cancernetwork.com/end-life-care/synergizing-radiation-therapy...

Excerpt:   "

Reduction to Practice: Preclinical Studies
External-Beam Radiation and Cancer Immunotherapy

In vivo preclinical studies have demonstrated that the combination of tumor-focused external-beam radiation and immunotherapy can facilitate antitumor immunity better than either modality alone. Younes et al[24] studied endogenous T-cell responses to renal cell carcinoma with bilateral pulmonary metastases in a murine model and observed that local irradiation to the left lung in combination with systemic IL-2 (Proleukin) therapy led to greater tumor reduction in both lungs than was achieved by either modality alone.

 

For active specific immunotherapy, therapeutic cancer vaccines are being investigated. TAAs such as CEA and MUC-1, which are overexpressed on a wide variety of tumor cells in vivo,[25] are being studied as targets for vaccine-mediated immunotherapies.[26-29] Chakraborty et al[30] have focused on the combination of low-dose radiation (8 Gy) delivered directly to the tumor, and active therapeutic vaccination for the treatment of subcutaneous murine tumors. There, the vaccine was composed of poxviral vectors that express CEA and three T-cell costimulatory molecules: B7-1, ICAM-1, and LFA-3 (CEA/TRICOM). Although either modality alone was ineffective, the combination of radiation and vaccine was not only curative in 50% of mice bearing CEA-expressing tumors, but also imparted protection from subsequent tumor challenge.

Interestingly, mice cured of tumors demonstrated “antigen cascade”; that is, they developed CD4-positive and CD8-positive T-cell responses not only for CEA, but also for other tumor antigens not encoded in the vaccine, such as p53 and gp70. The immune response to gp70 was much greater than that seen to the vaccine-encoded CEA, suggesting that the immune response to the cascade antigen may play an important role in antitumor activity. This antigen cascade phenomenon has also been observed in patients enrolled in clinical trials (see below).

Bone-Seeking Radionuclide and Cancer Immunotherapy

In advanced stages, many primary human carcinomas such as thyroid, breast, kidney, prostate, and multiple myeloma typically involve painful bone metastases that require palliative therapy. Strontium-89 (89Sr, Metastron) and samarium-153 (153Sm lexidronam, Quadramet) are bone-seeking radiopharmaceuticals used to relieve the pain of metastasis to bone. The calculated dose of palliative radiation delivered to bone metastases by 153Sm lexidronam is between 18 and 80 Gy[31,32]—doses that have been associated with phenotypic modulation of human tumor cells.

In one study, 10 human tumor-cell lines representing classes of tumors that metastasize to bone (4 prostate, 2 breast, and 4 lung) were exposed to clinically relevant palliative levels of 153Sm lexidronam for 4 days, then examined by flow cytometry for modulation of several cell-surface molecules. Of the 10 cell lines, 100% upregulated Fas and CEA, 70% upregulated MUC-1, 40% upregulated MHC class I, and 30% upregulated ICAM-1. Upregulation of any of these surface molecules could potentially render tumor cells more susceptible to killing by CTLs.[33]

 

 

 

 

I'm me, not a statistic. Praying to not be one for years yet.

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