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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Angela C's picture
Replies 13
Last reply 12/27/2011 - 2:58pm

Hi there.

I'm just curious if any of you that have taken Yervoy have seen your hair color change to white. I've read the articles about people who's hair turns white after Yervoy and how they are long time responders to the drug. Here's one of the articles:

http://www.reuters.com/article/2010/06/06/us-cancer-melanoma-hair-idUSTR...

I had my last dose of Yervoy on November 8th. Today I was getting ready, and noticed a bunch of white hairs in my eyebrows. I'm 30 years old. I should not have white eyebrows. I look at my eyebrows every morning when I'm doing my makeup and I've never noticed these before. It's like all of a sudden, a bunch of hairs just turned white. They aren't grey, they are white. The above article said that people who have their hair turn white see it start in their eyebrows.

Hmm..I'm wondering what to think of this. My first CT still showed growth in my adrenal tumor. We scan again at the end of January. Is it possible that this could be a sign that the Yervoy is kicking in?? Could something else be causing my eyebrows to turn white?

Just wondered if others have experienced this? I'm trying not to let myself get excited and think these white hairs mean I'm going to be a responder. But, it sure has me wondering what that next scan is going to show!!

~Angela

Be kind, for everyone is fighting a great battle. -Plato

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Camp Host's picture
Replies 7
Last reply 12/27/2011 - 12:47pm

Just wondering how long.... it will be before the feeling in my foot returns... feels like my foot is in a brick

toenails look like they may fall off.. Not  one of 5 docs explained this to me just what the healing process would be... 

I know everones healing process is different... But come'on ... was told the nerves re-route about 1mm a month .. 

A strong spirit and positive attitude goes a long way....... "Everyday is different and Everyday is Better"

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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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panda's picture
Replies 7
Last reply 12/27/2011 - 10:12am

pls can yu read my post on stage II melanoma i posted as anonymous and give me some advice thankyou

today is a gift and thats why its called the present

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panda's picture
Replies 1
Last reply 12/27/2011 - 9:16am
Replies by: panda

pls forgive me. ooops, new to this, didnt think my replies replied, but think ive accidentally replied the same comment three times, thinking it didnt post. bloody computers. aaaaagh. ooops

today is a gift and thats why its called the present

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pls forgive me. ooops, new to this, didnt think my replies replied, but think ive accidentally replied the same comment three times, thinking it didnt post. bloody computers. aaaaagh. ooops

today is a gift and thats why its called the present

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rjcravens's picture
Replies 1
Last reply 12/27/2011 - 8:23am
Replies by: scots

I am taken back by all the Christmas Blessing we have recieved this year. There are so many angels on earth with such big hearts. My kids had one of the best Christmas's ever thanks to all the support we recieved from family and friends. And even though I catch myself wondering if this is my last Christmas with them, my overwhelming fears are actually getting better. (Plus I am taking the Cymbalta)

  I stopped taking the Ritalin for fatigue last week and have found myself overly tired all over again. However, I keep reminding myself that I am halfway through the year of interferon treatments and that there is a light at the end of the tunnel. My family has been very supportive in putting up with my tired and grouchy butt. The only other issues I seem to be facing is the daily nausea and leg pains on the days after injections. It is such a deep pain, especially in my pelvic area and upper legs. It doesn't help after working twelve hour shifts at the hospital. Any suggestions for this? I have tried creams, heat, Norco....it is so deep that it seems like nothing can get to it. I have my husband use his fist and put pressure on my legs just to get some relief. (not sure why that helps)

  I go back to see oncologist in Jan and the Dermatologist in March. Praying that no other issues arise.

May everyone have a Blessed and Merry Chirstmas and a safe and Happy New Year. (i am so burning the 2011 calendar! What a year....geez)

 

Rachel - Stage IIb  Area popped up on arm in Jan 2011, surgery to remove Feb 2011, malignant melanoma.  Not in lymph nodes. Interferon started in May 2011. First month IV then injections. Scared to death of returning.

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Ashykay's picture
Replies 1
Last reply 12/27/2011 - 4:19am
Replies by: FormerCaregiver

Hi all

Apologies for not updating sooner on my Mums Yervoy treatment - time really does get away.

Mum started Yervoy around October (plz see my profile for details up till now).

Mum has had a rough trot since then. After she started the treatment, her pain seemed to incredibly intensify. This led to a week in hospital for the first time. She was out of it a lot of the time due to the morphine & other drugs she was on. At first, the registrar in the hospital had told us that this was probably due to the tumor growing. This was incredibly devastating news. However, about an hr later, Mum had a visit from her Yervoy trial doctor. He told mum that due to the sudden onset of her pain after her treatment, he actually thought it may be the Yervoy working and making her immune system go a bit crazy around the tumor. He said he has seen this sudden & early reaction in a number of his patients previously. It was a tough week though - mum lost confidence and was scared to go home to be in the amount of pain she had been. However, before she left they gave her an epidural which significantly reduced her pain - I think she was even off morphine for a bit!

Since then, she has been getting numbness and pain in her left leg (which is not the leg which was previously affected by the tumor - it had been her right leg). She's on Targin & Lyrica now. Its hard to know what she is experiencing is being caused by the tumor or that Yervoy has her immune system working hard & attacking that evil tumor! Her symptoms include: a hard spot where the vaccine has gone through on her leg, hives & itchy rash on her body including her back, extreme fatigue (sleeping 4 days on end/even midst conversation), confusion & forgetfulness, numbness in the left leg and hands, aching wrists etc. She also has incontinence (however this was present to some extent prior to treatment due to the location of her tumor).

I've read about the Yervoy side effects and a lot of these are listed in the common category. Hopefully that immune system of hers is working hard and the scans which will come after her last treatment in March will be positive. It's really difficult sometimes seeing mum being so forgetful & incapable of doing things like she used to. She has her good days and bad days, as I'm sure everyone on this forum would understand. We are just trying to take each day as it comes.

Anyway thanks for reading this, and would love to hear your thoughts. Hope you all had a lovely Christmas & wishing you a most positive New Year.

Cheers - Ashley

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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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I would like to wish each and every one of my carepage friends the warmest and deepest greetings this Holiday Season. We been through a lot and with the comfort of family and friends we can beat the Beast Melanoma.

It has been truely a renewed emergence in Melanoma therapy this past year with TWO therapies being FDA approved that extends survival for us Melanoma patients. At this time of the Season, please relect on the Worriors that are no longer with us, but made this all possible by offering their life to the progress of science.

They truely have shown us the gift of giving.

 They truely are my/our HEROS!!!

We will miss them dearly.

Happy Holidays

Jimmy B

“It is not the strongest of the species that survives, nor the most intelligent, but the one most responsive to change.”

~Charles Darwin~

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rjcravens's picture
Replies 0

I am taken back by all the Christmas Blessing we have recieved this year. There are so many angels on earth with such big hearts. My kids had one of the best Christmas's ever thanks to all the support we recieved from family and friends. And even though I catch myself wondering if this is my last Christmas with them, my overwhelming fears are actually getting better. (Plus I am taking the Cymbalta)

  I stopped taking the Ritalin for fatigue last week and have found myself overly tired all over again. However, I keep reminding myself that I am halfway through the year of interferon treatments and that there is a light at the end of the tunnel. My family has been very supportive in putting up with my tired and grouchy butt. The only other issues I seem to be facing is the daily nausea and leg pains on the days after injections. It is such a deep pain, especially in my pelvic area and upper legs. It doesn't help after working twelve hour shifts at the hospital. Any suggestions for this? I have tried creams, heat, Norco....it is so deep that it seems like nothing can get to it. I have my husband use his fist and put pressure on my legs just to get some relief. (not sure why that helps)

  I go back to see oncologist in Jan and the Dermatologist in March. Praying that no other issues arise.

May everyone have a Blessed and Merry Chirstmas and a safe and Happy New Year. (i am so burning the 2011 calendar! What a year....geez)

 

Rachel - Stage IIb  Area popped up on arm in Jan 2011, surgery to remove Feb 2011, malignant melanoma.  Not in lymph nodes. Interferon started in May 2011. First month IV then injections. Scared to death of returning.

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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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Anonymous's picture
Anonymous
Replies 1
Last reply 12/23/2011 - 6:03pm
Replies by: Julie in SoCal

Hi Julie,

Hope things are going well for you. Are you back in the states?

I have read your posts that Dr. O'day is your doctor. Have you been in contact with him??? I am a former patient and would like to hook up with him now that he left Angeles Clinic.

Please post any information you might have on his new practice.

Thanks,

Wendy

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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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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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