MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

Expand/ Collapse Topic
 
Replies By
View Topic
Janner's picture
Replies 18
Last reply 4/18/2012 - 11:22am

I post this mostly for those newly diagnosed early stagers - to give them perspective.  20 years ago I was diagnosed with my first melanoma.  No internet back then.  Even the medical library at the University had scarce material on melanoma - and what it did have was doom and gloom.  I really didn't know what life had in store for me - melanoma-wise, that is.  There was no one I could ask questions of, no resources to scour.  I did one or two followups with my derm, but then my insurance changed and I didn't see another derm for 8 years.  That's when I noticed what I was sure was melanoma primary #2.  Primary #3 followed the next year.  I've had 2 stage IB primaries and one in situ.  I am NED from all of them.  I became an internet melanoma researcher after #3.  Learned too much for my own good.  Who'd have thought the knowledge would come into play again in my own family a few years later.  Both of my adoptive parents have been diagnosed with melanoma in their 80's.  What are the odds? 

Anyway, the real point of this posting is to show that MOST early stagers go on to live normal lives and have no need to come back to this board for help.  I can't tell you the number of early stagers who have come and moved on over the 10 years I've been on this board.  Life does go on.  I know there are warriors on this board who started out as stage I and have advanced, but most do not.  I want to show that there is the other side of the coin and that this BB is not a representative sample for the early stagers.

Janner

http://www.MelanomaResources.info

Login or register to post replies.

Gene_S's picture
Replies 10
Last reply 4/18/2012 - 7:14am

 

Scientists reverse stance on sun and cancer: Now they admit sunlight can prevent skin cancer

Learn more: http://www.naturalnews.com/032533_sun_exposure_skin_cancer.html#ixzz1Nrwxbjb9

I am a firm believer in this. The only way to know your vitamin D levels is to have them tested.

The best test is the "25-hydroxy" vitamin D test.

Best wishes,

Gene

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

Login or register to post replies.

matthew82wa's picture
Replies 6
Last reply 4/18/2012 - 1:45am

My name is Matthew I live in Leavenworth WA and I am planning on doing a fundraiser this summer to Hike For A Cure I lost a cousin to Melanoma last year Hike For A Cure is what my Foundation is called

Login or register to post replies.

natasha's picture
Replies 3
Last reply 4/18/2012 - 12:09am
Replies by: imissmommy2003, SarahS

Hello everyone !

Today I had my first sheduled follow up appointment with Doctors in Adenbrooks hospital Cambridge .

Doctor checked my all body (but it took about 2 minutes for her ) and said all moles look fine.I am a bit suprised full body check is so quick .

I had question about pregnancy and I was told I can go ahead with what ( but I am not sure myself and very scared).

I was told 0.2mm radial growth melanoma gives me very good chanse to survive and have children:)

Doctor checked my lymthnodes as well and my Wide excision scar .

So far so good !!!!!!!

Natasha , 31 Years old lady from UK

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 4/17/2012 - 11:49pm
Replies by: Swanee

Hi, 

 

Does anyone know how Kevin is diong on Zelboraf?

Login or register to post replies.

AnnaBanana30's picture
Replies 1
Last reply 4/17/2012 - 11:07pm
Replies by: imissmommy2003

I just had to share this...I just ordered a bunch of awarness bracelets and plan to sell them to everyone I know for $5 a piece and give all the proceeds to research.

I thought of this idea for the bracelet the other day. I ordered a white bracelet to represent pale skin. Then in big black writing I put Mela-NO-MORE!! and two black Melanoma awarness ribbons on either side.

On the back side I put a link to this website www.melanoma.org

I am really hoping to raise some money for research and also spread awarness around my group of friends and our community. I live on the lake and have never gone out in the sun (red hair and freckles) but ALL my friends do and I'm really hoping the current situation with my dad and myself will hep them realize they need to be careful and get checked!

I just placed my order and had to share.

I hope everyone has a wonderful day.

Anna

Login or register to post replies.

Anonymous's picture
Replies 2
Last reply 4/17/2012 - 1:23pm
Replies by: JerryfromFauq, Phil S

My beautiful, wonderful Mother, age 60 was diagnosed last Thursday with anal melanoma.  I am looking for any advise on the most experienced doctors or clinics with this kind of melanoma.  We live live in Calgary, Canada and I am certain that doctors here do not have any experience in anal melanoma.  I need the very best treatment for my Mom, I will and can travel anywhere.  She will have her PET scan on Friday.  Please help us if you have any information on doctors and clinincs.  Thank you.

Login or register to post replies.

I have heard that some are two years survivors at stage IV, on this trial. Others say the trial for this combo started in late 2010. Does anyone know?

The history of the world is the battle between superstition and intelligence.

Login or register to post replies.

o2bcheri's picture
Replies 5
Last reply 4/17/2012 - 7:30am

 

 

has anyone heard of Cellect?  or tried it?? 

 

been doing a lot of research for my best friend and daughter....

 

check it out... interesting at the least... 

 

http://checkmedaily.com/health-beauty/diagnosed-no-evidence-of-cancer-tr...

Login or register to post replies.

dezb's picture
Replies 5
Last reply 4/17/2012 - 1:14am
Replies by: LynnLuc, Erinmay22, Anonymous, dezb

Cancer Breakthrough with Spontaneous Remission

by Jeffrey Dach MD

Injecting cancer into mice is a major activity at Wake Forest Medical School in North Carolina, keeping students busy with many publications over the years.  Injecting the cancer cells prompty kills the mouse, but first, the mouse makes fluid in the abdomen, also called ascites. 

Left Image: Lab Mice courtesy of wikimedia commons.

Chance Favors the Prepared Mind - Luis Pasteur

Then one day, a medical student injected a mouse and noticed something strange happened. What happened? Nothing.  The mouse didn't get cancer, and no fluid in the abdomen.  The first mouse that could kill cancer was discovered.

Spontaneous Regression of Cancer in the Mouse

Once identified as a "cancer killing" mouse, the little furry fellow was earmarked for study.  These were exciting times in the lab.  Researchers in the lab asked some urgent questions. Why didn't this mouse get cancer and ascites like all the others?  How was this mouse able to resist injected cancer cells? What was the mechanism for the rejection of the cancer cells?

Over the next 3 years, research studies showed these mice are immune to cancer, a trait innate to this SR/CR strain.  Their immunity to cancer was genetically determined.  These mice have an immune system that could fight cancer by sending immune cells, the leukocytes to attack and kill the cancer cells, just as any other microbial invader. These mice were dubbed SR/CR mice for Spontaneous Regression/Complete Resistant (to Cancer).(2)

Saving All the Other Mice From Cancer

What about the other normal mice? They had no immunity and promptly died of cancer.
Could these normal mice be saved by infusing the white cells, the lymphocytes,  from the SR/CR mice ?  More experiments quickly confirmed this was true, cancer resistance could be transferred to normal mice transfused with white blood cells from SR/CR mice.(3)  In addition, the protective SR/CR white cells could be stockpiled in cold storage, infused weeks later, and still retain activity.(4)

Human Mice - Spontaneous Regression of Cancer

What about us humans?  Do we have a similar immunity to cancer, with some humans able to resist cancer?  Yes, and this is called spontaneous regression  (remission) of cancer, which has been reported for virtually all cancers many times in the medical literature.  Spontaneous regression can be seen most commonly in neuroblastoma, renal cell carcinoma, malignant melanoma and lymphomas/leukemias (see Papac RJ and Chodorowski Z)(5)(6)

Sir William Osler, a legendary doctor reported 14 cases of breast cancer spontaneous remission.   I have seen a documented case of spontaneous regression of breast cancer.(8)  A study by Dr Gilbert Welch concluded that small breast cancers may spontaneously regress.  Gina Kolata wrote a New York Times piece about it.  

Adoptive Immunotherapy - A Promising New Cancer Treatment

The mouse model showed cancer resistance can be tranferred by white blood cells called T lymphocytes.  How about humans?  Steven A Rosenberg MD PhD has work in humans showing great promise.  As Chief of Surgery at the National Cancer Institute, Dr. Rosenberg has developed a cancer treatment using immunotherapy with T lymphocytes  infused into cancer patients.  His results have been remarkable.(7)  Dr Rosenberg's treatment uses a cancer patient’s own T lymphocytes which have innate anti-tumor activity, the lymphocytes are activated and cloned in a test tube, and then reinfused into the cancer patient.  This method is currently the most effective treatment for patients with metastatic melanoma producing tumor regressions in 50% of patients. See Rosenberg's case images below showing tumor regression (7).

Figure 2 from article: Examples of objective tumor regressions in patients receiving adoptive cell transfer of autologous anti-tumor lymphocytes following a lymphodepleting preparative regimen In each case the pretreatment scans and photos are shown on the left and the post-treatment on the right.

Left panel (a) A 45-year-old male with metastatic melanoma to the liver (upper) and right adrenal gland (middle) who was refractory to prior treatment with high dose α interferon as well as high-dose interleukin 2 (IL2). He underwent a rapid regression of metastases and developed vitiligo (lower).

Right panel (b) A 55-year-old male with rapid tumour growth in the axilla as well as multiple brain metastases from metastatic melanoma that was refractory to prior treatment with high dose IL2 who underwent rapid regression of nodal and brain metastases.

What's in the Future?

Since Adoptive cell transfer is not a drug, and competes with conventional drug treatment (chemotherapy), the pharmaceutical industry might be hostile to the idea.
T Cell Immune therapy is highly personalized treatment, labour-intensive and requires laboratory expertise.  Each lymphocyte preparation is uniquely created for each patient and this makes it difficult to commercialize.   Where to get the anti-tumor T cells?  Blood banks have been providing stem cells for clinical studies, and might also serve as a source for anti-tumour T cells.

Driving Through the Rear View Mirror - Fever Therapy

One of the curious things about spontaneous regression of cancer is its association with high fever from bacterial infection such as erysipales.  This was reported by surgeons many years ago when they observed that some cancer patients had a remarkable  regression of the tumor mass if their clinical course was complicated by post-operative infection of some type leading to high fever and chills.  If the infection didn't kill them, these cancer patients did well, with a remarkable remission from their cancer.

One such emminent sugeon was Chief of Bone Surgery at the Memorial Sloan Kettering Hospital.  His name was William Coley, and he perfected this treatment of injecting bacterial toxins (Coley's Toxins) into cancer patients inducing high fever, stimulating the immune system and obtaining remarkable regression in many inoperable cases. After a long and successful period of use, Coley died , and his Coley's Toxin treatment was banished from Memorial in 1955.  In 1963, the Food and Drug Administration (FDA) refused to “grandfather” Coley’s toxins, as a pre-existing medicine, making it illegal in the US.

Coley's toxins probably activated the immune system to send immune cells called  T lymphocytes to the tumor and kill it.  Perhaps Dr Steven Rosenberg can look through the rear view mirror, and the example of Coley's toxins,  and drive the NIH into the next century with a cure for cancer. 

Is this the end of cancer? I hope so.

Links and References

(1) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC164507/
Proc Natl Acad Sci U S A. 2003 May 27; 100(11): 6682–6687.
Spontaneous regression of advanced cancer: Identification of a unique genetically determined, age-dependent trait in mice. Zheng Cui, Mark C. Willingham, Amy M. Hicks, Martha A. Alexander-Miller et al.

We have established and studied a colony of mice with a unique trait of host resistance to both ascites and solid cancers induced by transplantable cells. One dramatic manifestation of this trait is age-dependent spontaneous regression of advanced cancers. This powerful resistance segregates as a single-locus dominant trait, is independent of tumor burden, and is effective against cell lines from multiple types of cancer. During spontaneous regression or immediately after exposure, cancer cells provoke a massive infiltration of host leukocytes, which form aggregates and rosettes with tumor cells. The cytolytic destruction of cancer cells by innate leukocytes is rapid and specific without apparent damage to normal cells. The mice are healthy and cancer-free and have a normal life span. These observations suggest a previously unrecognized mechanism of immune surveillance, which may have potential for therapy or prevention of cancer. 

(2) http://www.cancerimmunity.org/v6p11/060911.htm
Cancer Immunity, Vol. 6, p. 11 (31 October 2006) Submitted: 28 March 2006. Resubmitted: 17 July 2006. Accepted: 28 September 2006. Effector mechanisms of the anti-cancer immune responses of macrophages in SR/CR mice.

Amy M. Hicks et al. The killing of cancer cells in SR/CR mice requires three distinct phases. First, the leukocytes must migrate to the site of cancer cells after sensing their presence. Second, they must recognize the unique properties of the cancer cell surface and make tight contact with it. Third, the effector mechanisms must finally be delivered to target cells. The difference between SR/CR and WT mice seems to lie in one of the first two phases. Upon challenge with cancer cells, WT mice lack leukocyte infiltration and rosette formation. Apparently, the mutation in SR/CR mice renders the leukocytes capable of sensing unique diffusible and surface signals from cancer cells, and of responding to the activation signals by migration and physical contact. Once the first two phases are accomplished, unleashing the pre-existing effector mechanisms for killing seems to ensue by default. Therefore, the mutated gene (or genes) likely determines whether leukocytes interpret the signals from cancer cells as inhibition, as in WT leukocytes, or as activation of migration and target recognition, as in SR/CR leukocytes. Identifying the mutated gene (or genes) will likely explain this unique resistance to cancer through immunity.

(3) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1458507/?tool=pubmed
Proc Natl Acad Sci U S A. 2006 May 16; 103(20): 7753–7758.  Immunology Transferable anticancer innate immunity in spontaneous regression/complete resistance mice. Amy M. Hicks et al.

(4) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2749872/?tool=pubmed
BMC Cancer. 2009; 9: 328. Impact of sex, MHC, and age of recipients on the therapeutic effect of transferred leukocytes from cancer-resistant SR/CR mice
John R Stehle, Jr,1 Michael J Blanks,2 Gregory Riedlinger,1,3 Jung W Kim-Shapiro,1 Anne M Sanders,1 Jonathan M Adams,1 Mark C Willingham,1 and Zheng Cui1
1Department of Pathology, Wake Forest University School of Medicine Winston-Salem, North Carolina 27157, USA

Abstract Background
Spontaneous Regression/Complete Resistant (SR/CR) mice are resistant to cancer through a mechanism that is mediated entirely by leukocytes of innate immunity. Transfer of leukocytes from SR/CR mice can confer cancer resistance in wild-type (WT) recipients in both preventative and therapeutic settings. In the current studies, we investigated factors that may impact the efficacy and functionality of SR/CR donor leukocytes in recipients.

Spontaneous regression of cancer in Humans

(5)http://www.ncbi.nlm.nih.gov/pubmed/9891219
In Vivo. 1998 Nov-Dec;12(6):571-8.
Spontaneous regression of cancer: possible mechanisms. Papac RJ.
Section of Medical Oncology, Yale University School of Medicine, New Haven, CT 06520, USA.

Spontaneous regression of cancer is reported in virtually all types of human cancer, although the greatest number of cases are reported in patients with neuroblastoma, renal cell carcinoma, malignant melanoma and lymhomas/leukemias. Study of patients with these diseases has provided most of the data regarding mechanisms of spontaneous regression. Mechanisms proposed for spontaneous regression of human cancer include: immune mediation, tumor inhibition by growth factors and/or cytokines, induction of differentiation, hormonal mediation, elimination of a carcinogen, tumor necrosis and/or angiogenesis inhibition, psychologic factors, apoptosis and epigenetic mechanisms. Clinical observations and laboratory studies support these concepts to a variable extent. The induction of spontaneous regression may involve multiple mechanisms in some cases although the end result is likely to be either differentiation or cell death. Elucidation of the process of spontaneous regression offers the possibility of improved methods of treating and preventing cancer.

(6) http://www.ncbi.nlm.nih.gov/pubmed/17724923
Przegl Lek. 2007;64(4-5):380-2.
[Spontaneous regression of cancer--review of cases from 1988 to 2006]
Chodorowski Z, Anand JS, Wiśniewski M, Madaliński M, Wierzba K, Wiśniewski J.
Katedra i Klinika Chorób Wewnetrznych, Geriatrii i Toksykologii Klinicznej, Akademii Medycznej w Gdańsku.

Spontaneous regression of malignant tumours is a rare and enigmatic phenomenon. We reviewed the cases of spontaneous regression of cancer in medical literature according to MEDLINE database in the period 1988-2006 and compared them with similar reviews from 1900-1987 period. The number of reported cases of spontaneous regression increased steadily in XX century, probably due to a rising interest in this problem and new possibilities of radiological and biopsy examinations. Spontaneous regression of malignancy was reported in almost all types of human cancer, although the greatest number of cases in years 1988-2006 were reported in patients with nephroblastoma, renal cell carcinoma, malignant melanoma, lymphoma. Elucidation of the process of spontaneous regression offers the possibility of improved methods of preventing andlor treating cancer.

Adoptive Cell Therapy ACT

(7) http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2553205/?tool=pubmed
Nat Rev Cancer. 2008 April; 8(4): 299–308.
Adoptive cell transfer: a clinical path to effective cancer immunotherapy
Steven A. Rosenberg, Nicholas P. Restifo, James C. Yang, Richard A. Morgan, and Mark E. Dudley. Surgery Branch, Center for Cancer Research, National Cancer Institute, National Institutes of Health, 10 Center Drive, Bethesda, Maryland 20892, USA.

Adoptive cell therapy (ACT) using autologous tumour-infiltrating lymphocytes has emerged as the most effective treatment for patients with metastatic melanoma and can mediate objective cancer regression in approximately 50% of patients. The use of donor lymphocytes for ACT is an effective treatment for immunosuppressed patients who develop post-transplant lymphomas. The ability to genetically engineer human lymphocytes and use them to mediate cancer regression in patients, which has recently been demonstrated, has opened possibilities for the extension of ACT immunotherapy to patients with a wide variety of cancer types and is a promising new approach to cancer treatment.

Figure 2
Examples of objective tumour regressions in patients receiving adoptive cell transfer of autologous anti-tumour lymphocytes following a lymphodepleting preparative regimen
In each case the pretreatment scans and photos are shown on the left and the post-treatment on the right. a | A 45-year-old male with metastatic melanoma to the liver (upper) and right adrenal gland (middle) who was refractory to prior treatment with high dose α interferon as well as high-dose interleukin 2 (IL2). He underwent a rapid regression of metastases and developed vitiligo (lower). b | A 55-year-old male with rapid tumour growth in the axilla as well as multiple brain metastases from metastatic melanoma that was refractory to prior treatment with high dose IL2 who underwent rapid regression of nodal and brain metastases.

The future of ACT

In contrast to common epithelial cancers, melanoma appears to be a tumour that naturally gives rise to anti-tumour T cells. However, other cancers are equally susceptible as the targets of reactive T cells. The susceptibility of melanoma to ACT provides optimism for the application of ACT to common epithelial cancers using TCR gene-modified lymphocytes.

A major problem with the application of ACT is that it is a highly personalized treatment and does not easily fit into current modes of oncological practice. The treatment is labour-intensive and requires laboratory expertise. In essence, a new reagent is created for each patient and this patient-specific nature of the treatment makes it difficult to commercialize. Pharmaceutical and biotechnology companies seek off-the-shelf drugs, easy to produce, vial and administer. From a regulatory standpoint, ACT might be more appropriately delivered as a service rather than as a ‘drug’. Blood banks have been instrumental in providing CD34+ haematopoietic stem cells for clinical studies and might be the ideal location for the generation of the anti-tumour T cells needed for ACT.

As modern science increasingly provides the physician with sophisticated information about the unique aspects of an individual cancer, changes in the modes of care delivery need to accommodate this. The ability to use this patient-specific information can lead to a new era of personalized medicine in which individual treatments, such as ACT, are devised for each patient.Studies of ACT have clearly demonstrated that the administration of highly avid anti-tumour T cells directed against a suitable target can mediate the regression of large, vascularized, metastatic cancers in humans and provide guiding principles as well as encouragement for the further development of immunotherapy for the treatment of patients with cancer.

(8)The Medical Aspects of Carcinoma of the Breast, with a Note on the Spontaneous Disappearance of Secondary Growths, OSLER W., American Medicine: April 6 1901; 17-19; 63-66. 

Coley's Toxins Fever Therapy

http://www.ralphmoss.com/html/coley.pdf
THE TREATMENT OF CANCER WITH COLEY’S TOXINS

http://bioinfo.tg.fh-giessen.de/cancer/hobohm-2005-bjc.pdf
British Journal of Cancer (2005) 92, 421 – 425 Fever therapy revisited
U Hobohm*,1 1University of Applied Sciences, Bioinformatics, Wiesenstrasse 14, D-35390 Giessen, Germany

http://findarticles.com/p/articles/mi_m0ISW/is_251/ai_n6112670/?tag=cont...
Coley's Toxins—The First Century Townsend Letter for Doctors and Patients, June, 2004 by Helen Coley Nauts

Jeffrey Dach MD
4700 Sheridan Suite T
Hollywood Fl 33021
954-983-1443
http://www.jeffreydach.com/  
http://www.drdach.com/  
http://www.naturalmedicine101.com/  
http://www.truemedmd.com/  

Disclaimer click here: http://www.drdach.com/wst_page20.html  

The reader is advised to discuss the comments on these pages with his/her personal physicians and to only act upon the advice of his/her personal physician. Also note that concerning an answer which appears as an electronically posted question, I am NOT creating a physician -- patient relationship. Although identities will remain confidential as much as possible, as I can not control the media,
I can not take responsibility for any breaches of confidentiality that may occur.

Link to this article:
http://jeffreydach.com/2009/11/04/cancer-breakthrough-with-spontaneous-r...

Copyright (c) 2009,2010 Jeffrey Dach MD All Rights Reserved. This article may be reproduced on the internet without permission, provided there is a link to this page and proper credit is given.

FAIR USE NOTICE: This site contains copyrighted material the use of which has not always been specifically authorized by the copyright owner. We are making such material available in our efforts to advance understanding of issues of significance. We believe this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, the material on this site is distributed without profit to those who have expressed a prior interest in receiving the included information for research and educational purposes.

Login or register to post replies.

rmuffybear's picture
Replies 8
Last reply 4/17/2012 - 12:41am

This web site has been so helpful.  I had two melanoma surgeries, 5 lymph nodes were taken from the groin.  Melanoma Stage 3.  My foot and ankle are swollen.  I was told to wear the compression stockings all day so I have for 10 days. I had two leg messages from a therapist.  Now my ankle has a rash.  Is this a problem?  Will the swelling go down?  Thank you to all of you who have helped me get this far.

Login or register to post replies.

Lisa13's picture
Replies 6
Last reply 4/16/2012 - 9:58pm
Replies by: jag, kylez, Lisa13, Anonymous, Kathy of Massachusetts

What if someone had a tumour last November and some of it seems a bit bigger.  They thing it's mostly dead tissues, but now they're double checking with their group of people.  What happens if it's growing and a tumour that can't ben gamma knifed, what are the other options?  What if cranitomoy isn't a possibility? 

I have 4th infusion of ipi (on my reinduction) so I'm hoping the reasing it could be gettign bigger is because of ip.

Lisa

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

Login or register to post replies.

natasha's picture
Replies 5
Last reply 4/16/2012 - 5:50pm
Replies by: natasha, Cynaburst, Janner

Hello everone!

         I was searching in internet again and found out , that melanoma with ANY Breslow thickness,even 0.1 mm ,already have vertical growth in it.

         My path report says MM Breslow 0.2 mm , vertical growth - absent, radial growth - present.

         Is it mistake in pathology ? Does anyone had the same ???

         Thank you for your support and information. It is more then 3 months since my diagnosys ,but I still worry a lot, my doctor put me on antidepressants :(  I am sorry about this post , and I know I am not in the worst place to be with my pathology ,but I just cant help myself worrying.

I am checking my every freckle and all seems a new melanomas for me. I think I am going mad.

Login or register to post replies.

beatricefromPARIS's picture
Replies 3
Last reply 4/16/2012 - 5:11pm

Hi all

After one month on Zelboraf, palpable tumors have greatly reduced but I find it very tiring.  Basically I stay in bed over 50% of the day, whereas before I was in much better shape before (apart from mel growing!).

The joint pain is high but not the same every day. I was wondering whether it can be impacted by nutrition. Should I reduce dairy products for example? Has anybody noticed any such correlation?

I take the 4 pills away from meals but it seems that the lab is now changing its guidance on this to "during meals". Confusing!

Also, I keep reading on the net about successful stage IV Zelboraf patients who have been taking it for many months/even years...That's nice because it means it is working ! But my first impression is that the quality of life can be low...  

Is there anyone around who took Zelboraf, became NED and could stop the medication?

 

 Beatrice Stage IV since feb 2009, 7th treatment underway.

Login or register to post replies.

gabsound's picture
Replies 7
Last reply 4/16/2012 - 4:30pm

I finally have some good news to report!

Quick review: Dx Feb 2011 WLE SNLB positive microscopic 1 node. Complete rt groin dissection- rest of nodes negative. Did high dose interferon May 2011, 1 high dose injection then stopped. Surgery July 1 for recurrence at bottom of lymph node scar. Did 4 rounds biochemo- July , august, sep, oct. Recurrence again in same area surgery end November. Started Yervoy end dec had 2 rounds then did radiation to right leg 20 treatments. Finished 4th Yervoy on 2/15/2012.

First PET/CT post Yervoy 02/28/2012 showed "Extensive progression of malignant disease with development of multiple, hepatic, osseous and pulmonary metastatic lesions."

Labs were also awful- LDH got up to 414. Liver enzymes markedly elevated alk phosphatase 374, ast 499, alt 1106.

Labs yesterday-LDH 152 normal!!. Liver enzymes alk phosphotase 142, ast 81, alt, 111 these are still a little high, but markedly improved.
PET/CT: " Very pronounced improvement in metastatic disease. Most of the pulmonary modules noted previously are no longer visible. A few small punctate nodules remain. Only one has identifiable activity on PET portion with < 1 SUV. It measures only a few millimeters. Hepatic metastatic disease has significantly improved. Very significant improvement in skeletal metastatic disease. Many lesions are no longer visible."

Hallelujah!!!!!!!!
Can't stop doing the happy dance.

I'm praying for all to see some improvement in their disease and even a cure.
Hope this post gives some hope to others. I really wonder if the biochemo with IL2 followed by Yervoy along with some radiation is the key to my body finally getting the message.

Julie in Las Vegas

Login or register to post replies.

Pages