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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Anonymous's picture
Replies 5
Last reply 12/24/2011 - 1:07pm

Could someone please "improve" the word verifications on this board. This is crazy, I have tried a dozen times-does not work.

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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hope4cure1's picture
Replies 4
Last reply 12/23/2011 - 3:19am

In our journey with melanoma, one thing I've come to expect is the unexpected.  Maybe this belongs on the off-topic forum, but I'll take a chance here.

With the news of my husband's clear scans this month, we were ready for a joyous holiday season.  Then came the unexpected.  On Monday, our Golden Retriever was diagnosed with.....yes, melanoma.  This came as a real shock, made more painful with the veterinarian telling us how terrible melanoma is.  I would have given the world to shield my husband from those words. It is inoperable, and the vet gave her 3 months.  She's not currently in pain, and we'll spoil her during the time we have together.

Who knew that dogs could get melanoma?  I look for reasons and lessons in everything.  The only light I can see here is that perhaps, since it is a concern to the veterinary community also,  a brilliant scientist in that field will unlock another clue that will result in the miracle we all hope for.  Could "man's best friend" prove to be just that?  It may sound far-fetched, given our radically different genetic makeup, but stranger things have happened. 

My Christmas wishes are for amazing breakthroughs in the coming year.  The gift this disease has given many of us is a clearer understanding and appreciation of life's true treasures. I would wager that many of you have the same thing on the top of your list too.

Happy Hanukkah to those celebrating your third special night.   Merry Christmas to everyone who is still trying to get cookies baked and stockings hung.  I hope that if the holiday's have you feeling down, that an unexpected sparkle will lift your spirits.

Hope

 

Become what you admire.

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Roxy1453's picture
Replies 3
Last reply 12/28/2011 - 2:37pm

I've been reading a lot of the posts about people taking Ipi. It is so encouraging to read how many people are doing so well during and after treatment. There doesn't seem to be any way of knowing how you will react.
I had my first treatment Dec. 6 ( my husbands birthday!) and will have my second on Dec.29(my daughters 25 birthday).
I have been dealing with Mel since 2006. It started on my nose. Three years later it came back in the same spot. I did a year of Leukin after 6 weeks of radiation. This year, Aug 22 I had surgery on my right lung to remove 3 spots, only 2 were Mel. Oct 14, I had surgery on my left lung to remove one spot. I thought everything was gone until my last PET scan showed a new spot behind my knee. I had not ever thought that I wouldn't beat this until that moment. It all became very real and it took me me a week to get my positive thinking back. This is all so very hard!

I prayer for everyone on this forum to have a happy holiday and may they find a cure for all of us soon!

Nancy

"I can do all things through Christ who strengthens me." Philippians 4:13

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Anonymous's picture
Anonymous
Replies 9
Last reply 12/27/2011 - 12:41pm
Replies by: boot2aboot, Anonymous, JerryfromFauq, Cynthia C

 

"MIRACULOUS" CURES: WHAT DO THEY TELL US?
Home page: www.acampbell.org.uk

A problem for rationalists?

From time to time we read reports of people who have recovered from serious or normally fatal illnesses thanks to what appears to be miraculous intervention. Sometimes this is ascribed to healing, sometimes to prayer, but there is always the implication that something paranormal has occurred, which is often attributed to divine origin. A recent example reported in the British Medical Journalwill serve as an example of the kind of thing I have in mind (Westcott R, 2002).

Dr Westcott is a GP who describes himself as an atheist doctor and wants to know how he should respond to what happened to one of his patients. This was Jim, a non-religious man suffering from asbestosis which he had acquired as a result of his work as a submarine engineer. Then he was diagnosed with a mesothelioma of the chest wall.

This is a well-known complication of asbestosis, and is a malignant tumour which is regarded as invariably fatal. Radiotherapy had little effect and Jim was becoming weaker. His wife decided that they should go for a Mediterranean holiday, and they picked the Greek island of Kefallinia. While there they visited a monastery. An old nun singled Jim out and and asked him what his illness was. She took him to a priest, who performed some kind of prayer or ritual involving some holy relics. Immediately after this Jim felt stronger, and his recovery continued. The tumour is now no longer apparent and Jim appears to be in remission, though Dr Westcott is still concerned that he may relapse later.

Skeptics who are confronted with cases of this kind generally take refuge in two kinds of objection: either the original diagnosis was wrong or the cure was due to the conventional treatment the patient had received previously. Neither of these seems likely to apply in the present case, nor in a number of others. So does this mean that we must accept that divine intervention, or at least paranormal healing, is a reality? Do miracles really occur? Cases like that reported by Dr Westcott certainly provide food for thought, but before accepting them as proof positive of the miraculous, I think we need to look a little more closely at what they actually tell us.

I find it interesting that the majority of claims for miraculous cures concern recovery from cancer. These are certainly highly impressive and dramatic and to many people seem to provide incontrovertible evidence for a miracle. But how often does cancer remit spontaneously outwith a religious context?

Do spontaneous cancer cures occur?

I carried out a search via Medline for reports of spontaneous remissions of cancer (that is, remissions occurring without treatment or with inadequate treatment). This produced some twenty-odd papers on the subject; there are doubtless many more to be found. Among the cancers reported to have remitted spontaneously are:

  1. adult T-cell leukaemia/lymphoma (Takezako et al., 2000)
  2. adult T-cell leukaemia (Murakawa M et al., 1990)
  3. oesophageal leiomyosarcoma (Takemura et al., 1999)
  4. lung cancer following myxoedematous coma (Hercbergs, 1999)
  5. hepatocellular carcinoma (2 cases; Magalotti et al., 1998)
  6. non-small-cell lung cancer (Kappauf et al., 1997)
  7. lung metastases from primary uterine cancer (Mastall H, 1997)
  8. liver cancer (Van Halteren HK et al., 1997)
  9. pleural and intrapulmonary metastases from renal carcinoma (Lokich J, 1997)
  10. squamous cell lung cancer (Schmidt W., 1995)
  11. bladder cancer (Hellstrom PA et al., 1992)
  12. intrahepatic, peritoneal and splenic metastases after hepatectomy for hepatocellular carcinoma (Terasaki et al., 2000)
  13. disappearance of lung metastases from hepatocellular carcinoma (Toyoda et al., 1999)
  14. large-cell and polymorphic lung cancer with extensive metastatic disease (Kappauf H. et al., 1997)
  15. metastatic malignant melanoma (Hurwitz PJ. 1991); several similar cases cited in the literature

As this undoubtedly incomplete list indicates, spontaneous remission of cancer, though very rare, does occur and is well authenticated outside a religious context. This will probably come as a surprise to many people, including some doctors. How do such events come about?

Mechanisms of cure

A number of papers discuss possible mechanisms by which spontaneous remission of cancer might occur. The most popular suggestion is some form of immunological reaction, though this is still unproven (Lokich J, 1997; Heim ME, Kobele C, 1995). There seems to be a connection between fever and remission of cancer (Murakawa M et al., 1990); fever in childhood or adulthood may protect against the later onset of cancer and spontaneous remissions are often preceded by feverish infections (Kleef R et al., 2001). The case of remission following myxoedema coma (Hercbergs A, 1999) suggests that hypothyroidism may trigger apoptosis (cell death) in tumours. Yet another idea is that DNA methylation, which is involved in cell differentiation, may play a part (Sugimura T, Ushijama T, 2000). And there is a long-standing impression that psychological states influence the functioning of the immune system.

In summary, then, while the mechanisms of spontaneous remission are by no means fully understood, there are plausible suggestions to explain the phenomenon.

Conclusion: limits to the miraculous?

What emerges from the cases I have cited is that if we divide diseases into those that may, no matter how rarely, recover spontaneously and those that do not, we must place cancer in the "may recover" category. This means that cancer cures, no matter how gratifying to patients who experience them and to their relatives, are not necessarily miraculous. They lie within the boundaries of the natural world.

What, then, would count as a genuine miracle, an event that could not be accommodated within the realm of the natural? It is of course difficult to set limits on what can occur naturally, but I think an example of something which, if it happened, would certainly have to be taken as miraculous would be regrowth of an amputated finger or limb.

If this seems a lot to ask, how about something seemingly simpler? An optic nerve damaged by glaucoma never recovers its function in the ordinary course of events; sight lost through glaucoma is lost for good. If sight were restored in a reliably diagnosed glaucomatous eye, that would certainly count as a miracle in my opinion. To my knowledge, however, no such case has been reported. These are just two examples out of many; what we need for a "genuine" miracle is recovery from some accident or illness in which no spontaneous cure has ever been shown to occur. But cancer doesn't fit the bill.

I therefore think that, although there are well-attested instances of spontaneous recovery from cancer within a religious or paranormal context, this is not convincing evidence for divine intervention. The fact that a patient recovers after having been prayed for does not prove that the prayer was responsible for the recovery.

Alternative explanations

  1. It could be coincidence. We do not know how many patients suffering from cancer are prayed for but the proportion is probably considerable. We do not normally hear about those for whom the prayers are not answered. If very many patients are prayed for, it is possible that among these there will by chance be some who recover spontaneously but who would have done so even if they had not been prayed for.

     

  2. If as seems likely the immune system is involved in spontaneous remissions of cancer, the known influence of the nervous system on the immune system could explain why the patient's beliefs and emotional state might on occasion bring about a remission. The fact that a patient had no conscious expectation of cure (as in the case reported by Dr Westcott) does not negate a possible influence of this kind.

     

  3. A believer in miracles could argue that even apparently spontaneous remissions are really miraculous. Perhaps God works his miracles through "normal" physiological pathways rather than by suspending the ordinary laws of physiology, and perhaps he refrains from curing glaucoma and regenerating amputated limbs in order to keep us guessing, or because he does not want to force our belief. This is logically possible but unverifiable and so can be neglected in a scientific context.

References

  • Ada GL. Host factors important in immune surveillance against tumours. IARC Scientific Publications. (39):223-39, 1982.
  • Booth G. A "spontaneous" recovery from cancer. Journal d'Urologie et de Nephrologie. 78(7):723-6, 1972 Jul-Aug.
  • Heim ME. Kobele C. Spontaneous remission in cancer. Onkologie. Vol 18(5) (pp 388-392), 1995.
  • Heim M, Schwarz R. Spontaneous remission of cancer: Epidemiological and psychosozial aspects. Zeitschrift Fuer Psychosomatische Medizin und Psychotherapie. Vol 46(1) (pp 57-70), 2000.
  • Hellstrom PA. Malinen L. Malinen H. Spontaneous remission of bladder neoplasm. European Journal of Surgical Oncology. Vol 18(5) (pp 521-523), 1992.
  • Herbert V. Unproven (questionable) dietary and nutritional methods in cancer prevention and treatment. Cancer. Vol 58(8 SUPPL.) (pp 1930-1941), 1986.
  • Hercbergs A. Spontaneous remission of cancer - A thyroid hormone dependent phenomenon?. Anticancer Research. Vol 19(6 A) (pp 4839-4844), 1999.
  • Hercbergs A. Leith JT. Spontaneous remission of metastatic lung cancer following myxedema coma. Journal of the National Cancer Institute. Vol 85(16) (pp 1342-1343), 1993.
  • Hurwitz PJ. Spontaneous regression of metastatic melanoma. Annals of Plastic Surgery. Vol 26(4) (pp 403-406), 1991.
  • Kappauf HW. Unexpected benign course and spontaneous recovery in malignant disease. Onkologie. Vol 14(SUPPL. 1) (pp 32-35), 1991.
  • Kappauf H et al. Complete spontaneous remission in a patient with metastatic non-small- cell lung cancer. Case report, review of literature, and discussion of possible biological pathways involved. Annals of Oncology. Vol 8(10) (pp 1031-1039), 1997.
  • Kleef R et al 1. Fever, cancer incidence and spontaneous remission. Neuroimmunomodulation. Vol 9(2) (pp 55-64), 2001.
  • Lokich J. Spontaneous regression of metastatic renal cancer: Case report and literature review. American Journal of Clinical Oncology-Cancer Clinical Trials. Vol 20(4) (pp 416-418), 1997.
  • Magalotti D. Gueli C. Zoli M. Transient spontaneous regression of hepatocellular carcinoma. Hepato-Gastroenterology. Vol 45(24) (pp 2369-2371), 1998.
  • Mastall H. Spontaneous remission of lung metastases of a primary uterus carcinoma during immune therapy. Zeitschrift fur Onkologie. Vol 29(3) (pp 87-88), 1997.
  • Merkin L. The aetiology of cancer: clues from spontaneous recovery. Medical Hypotheses. 4(2):136-40, 1978 Mar-Apr.
  • Murakawa M et al. Spontaneous remission from acute exacerbation of chronic adult T-cell leukemia. Blut. Vol 61(6) (pp 346-349), 1990.
  • Niakan B. A hypothesis on the biochemistry of spontaneous remissions of cancer: Coupling of oxidative phosphorylation and the remission of cancer. Cancer Biotherapy & Radiopharmaceuticals. Vol 14(4) (pp 297-298), 1999.
  • Schartz R, Heim M. Psychosocial considerations about spontaneous remission of cancer. Onkologie. Vol 23(5) (pp 432-435), 2000.
  • Schmidt W. Spontaneous remission of a cancer of the right lung, following left side pneumonectomy because of squamous cell lung cancer, four years ago. Atemwegs- und Lungenkrankheiten. Vol 21(10) (pp 536-538), 1995.
  • Sugimura T. Ushijima T. Genetic and epigenetic alterations in carcinogenesis. Mutation Research-Reviews in Mutation Research. Vol 462(2-3) (pp 235-246), 2000.
  • Takemura et al. Case of spontaneous regression of metastatic lesions of leiomyosarcoma of the esophagus. Diseases of the Esophagus. Vol 12(4) (pp 317-320), 1999.
  • Takezako Y et al. Spontaneous remission in acute type adult T-cell leukemia/lymphoma. Leukemia & Lymphoma. Vol 39(1-2) (pp 217-222), 2000. Abstract
  • Toyoda H. et al. Hepatocellular carcinoma with spontaneous regression of multiple lung metastases. Pathology International. Vol 49(10) (pp 893-897), 1999.
  • Van Halteren HK et al. Spontaneous regression of hepatocellular carcinoma. Journal of Hepatology. Vol 27(1) (pp 211-215), 1997.
  • Westcott R. Can miracles happen? BMJ 2002;325:553.
don't back up, don't back down

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jmmm's picture
Replies 2
Last reply 12/23/2011 - 9:14am
Replies by: Woodlands, MariaH

Does anyone know about this drug? My husband has been on Zelboraf for 2 months. His scans showed mixed results..2 tumors gone, a few stable, and 2 new ones. His doctor wants to wait and rescan in two months. We'd like to be more proactive. We've talked to Vandrbilt, hoping for a PD-1 trial. They've offered a possibility of an E7080 trial. I've never heard of this drug. I did a little research, but there's not much there. Is anyone on this trial, any ideas on whether or not it works? Thanks for any thoughts or ideas.

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JoshF's picture
Replies 2
Last reply 12/22/2011 - 1:29pm
Replies by: washoegal, akls

Happy Holidays All-

Just wondering if anyone out there has ever experienced having a CT Scan come back and show a "spot" on the liver that ended up being nothing. I had Chest/Neck CT Scan in Nov which was clear. MRI of brain...clear. CT Scan of abdomen came back with this "spot" which was 1.5cm. My oncologist felt confident it is nothing (hemangatoma or some type of blood build up) but given the evasiveness of melanoma he wants to be sure. I had MRI yesterday as he felt this was least invasive test to determine. I'm nervous as hell....I was diagnosed in April and it has been a roller coaster to say the least.I make my side hurt just thinking about it!!!  Many of you have been a wealth of information and support.

Let's work for better treatments....for a cure!!!!

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94z28joe's picture
Replies 13
Last reply 1/9/2012 - 2:54pm

I had a mole in my top ridge of my ear that was starting to change. I went to the derematologist to have it looked at and removed. Two weeks later 10/20/2011 I got a call confirming my fears it was melanoma. I was set up with a doctor at the Windship Cancer institue in Atlanta to have a the WLE and SLN. Well 11/20/2011 I got the news that they had found microscopic meleanoma in the SLN. The depth of the tumor on my ears depth was less then .95 and the oncologist said he didnt expect it to have spread but they wanted to check to be sure. I'm glad they did but know I'm scarred as Hell I have to small children ages 4 and 9 and I'm only 33. I had just started I new career in Atlanta last october moving from Knoxville and bought a new house and looking foward to the future and all of the sudden bam I was hit with the reality of the future being shorter then I had expected. So, now im left waiting for the medical oncologist to call. So, we can talk about the options after the remove all the lymph nodes in that area.

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himynameiskevin's picture
Replies 7
Last reply 12/27/2011 - 11:25pm

Hey everyone, well I did my fourth and final dose of ipilimumab yesterday. All went well. Unfortunately this whole time while on the drug, I didn't seem to experience a single side effect, I say unfortunately because from what I understand, side effects are a good sign it may work. And I had nothing, so a part of me is a bit disappointed and worried. But who knows, I guess anything thing is possible. I should be thankful that overall I still feel pretty good. I've had a lingering itchy throat cough which signs point to a post nasal drip issue. But other than that I'm doing good. Still working and living close to as normal as I ever have. I'm going to enjoy the holiday and welcome the new year, do my best to make it through the "waiting period" until I have my scans in a couple weeks. I'll let you all know how it goes.  (fingers crossed).

I hope you're all having an enjoyable holiday season.

Talk to you soon.
-Kevin
 

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boot2aboot's picture
Replies 11
Last reply 12/26/2011 - 2:48am

I needed to let everyone know how my second set of scans went while on zelboraf...as some of you know, i have had major side effects while on zelboraf...my dosage was reduced way under what was recommended...i also had to go off the drug 3 x...in the last two months...and while only taking 3 pills total a day i still have shrinkage and no new tumors...not as dramatic as when i was on the full dose, but no new growths and shrinkage...i have to compare numbers to give you percentages and won't get to talk with doc one on one until next week...i am not bragging about this, i just need to let people know how this drug is working...so far- especially for people like myself who have a hard time tolerating the drug and find themselves also on reduced dosages...

i am on low dose steroids to handle the side effects (fever, nodusms, arthralgia, neuropathy, nausia, rashes)...i have to say i have never freaked out so much over scans before...many of you ,  i know are fighting bitter battles...we lost sooo many people...i still cry about Val, but for those of you winning the fight...keep on fighting and winning and those of you who are struggling...i say a prayer and pray we will have effective drugs this coming year...hang in there...

boots

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Jydnew's picture
Replies 2
Last reply 12/23/2011 - 1:26am

I thought this was interesting for stage ii (and perhaps iii) people who are kind of left in the "wait and see" group, even with, what I would consider, dangerously high recurrance rates.

An exerpt from the article:

BRANFORD, Conn., Dec. 21, 2011 /PRNewswire via COMTEX/ -- HistoRx recently licensed from Yale University a new clinical diagnostic assay based on AQUA® technology. This assay enables doctors treating patients with melanoma to identify a subset of those patients who, despite having no detectable cancer in their lymph nodes, have a 40% risk of recurrence of their disease. AQUA technology is an automated, quantitative IHC testing method that enables measurement of protein biomarkers in tissue as an aid to a pathologist's diagnosis. Such precise determination of first, the location within the tumor cell and second, the amount in each location is not possible with conventional testing methods, such as standard immunohistochemistry (IHC).

The prognostic assay was developed in the laboratory of David Rimm, MD, PhD, inventor of AQUA technology and Professor of Pathology, Director of Pathology Tissue Services at the Yale School of Medicine, and may be useful in guiding treatment decisions for Stage II, node-negative melanoma patients. "After surgical resection of the tumor, if the nodes are negative, we don't have much more to offer," said Dr. Rimm. "This assay allows us to measure the risk of recurrence which can be helpful to ease patient anxiety or to prompt patients to be aggressive in follow up or even consider adjuvant chemotherapy."

 

http://www.marketwatch.com/story/historx-licenses-melanoma-assay-from-yale-university-2011-12-21

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Low CoQ10 levels and Melanoma Metastasis.

See:
 
Best Wishes,
Gene
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gene_S's picture
Replies 6
Last reply 12/21/2011 - 11:13pm
Replies by: Charlie S, Anonymous, Gene_S

OUTRAGEOUS FDA DELAY ENDANGERS MELANOMA VICTIMS
Melanoma is almost completely curable if caught in time, yet 30% of malignant lesions go undetected due to human error. With a 98% accuracy rate, you would think a breakthrough, non-invasive diagnostic device called MelaFind® would gain swift FDA approval. In this exposé, we reveal why this technology languished in limbo for years–and how stifling agency bias and negligence are sending similar innovations overseas.
 

Click Here
Read the full story

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I found that downloading pages 84 to 91 using the .PDF icon in the lower right part of the page made it a lot easier to read this article!

Best Wishes,

Gene

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

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scots's picture
Replies 4
Last reply 12/22/2011 - 2:22pm

1 year scans all clear. NED    All of you will be in my prayers.

Merry Christmas

scot

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NYKaren's picture
Replies 4
Last reply 12/23/2011 - 2:38am

Dear MRF Friends,

Today is the first day of Chanukah.  Last night we lit the first candle on the menorah; tonight we'll light the second, and so on, until we reach eight.

Chanukah celebrates a miracle; as does Christmas.  I'm sure there are other faiths I've neglected to mention.

May we all be blessed with miracles in our often difficult quest for sustained NED, and may the medical community come up with a miracle that will cure us all!

love,

karen

Don't Stop Believing

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Charlie S's picture
Replies 6
Last reply 12/22/2011 - 12:47am

As his Thanksgiving present Jerry was moved from the hospital to physical rehab but he crashed and burned last week and was sent back to the hospital to stabalize once again. 

Now for his Christmas present, he has been cleared to go back to rehab after working out some insurance glitches.

In speaking with him today, he was quite lucid and very Jerry and not operating under the fog of better living through chemistry.  What a time he has had but he continues to slug away.

Once his move is complete, I'll get an physical address for you that would be so inclined to send him best wishes.  He's not able to respond right now to e-mails; but heck, load up his in-box anyway........................it will give him something to do !

Please keep Jerry in your good thoughts.

Cheers,

Charlie S

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