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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Replies by: MariaH, gabsound, Janner

Hi,

I updated my profile just 2 days ago and haven't gotten around to posting. I found the high dose phase to be not as bad as I was told it might be. Some nights w fever, chills and body aches, some nausea but for the most part felt just fine during the day. Some fatigue near the end which felt like I had lead weights on both my legs. I was quite worried about being able to work so arranged my schedule so I worked only 1/2 days. Knowing I only had to be there for 4 hours, no matter how I felt ,was psychologically good for me. My labs did change quite a bit with WBC and platelets dropping and liver enzymes up to > 6 x normal. Probably the most annoying symptom for me was the dry mouth. This was even worse if I had to take Compazine for nausea. I would wake up at night and could barely move my tongue. Needles to say, I was drinking lots of fluids.

My first subcut injection was a whole different story! I felt just awful within 4 hours of giving it and didn't recover for a full 24 hours-had to call in sick which is so hard on everyone when a full day of patients is already booked (I'm a sonographer, I do pregnancy ultrasounds). Another compounding factor was the Friday before I started my Interferon treatments 1/2 of the staff at Nevada Cancer Institue was terminated due to financial difficulties! That included my Melanoma Dr and his experienced nurse :( I went into this thinking I had an experienced team and had to deal with who was left. Luckily Dr. Samlowski and his nurse relocated to another Las Vegas Cancer Center. What a relief it was to find them!! But, that took 5 weeks. I didn't know what to do about self injections. Based on my symptoms Dr. Samlowski didn't think there was a lot to be gained for making myself miserable for the next 11 months. So I stopped. Hopefully that month will protect me!

So, not being on the medicine now for about 2-3 weeks I feel great. Went back to working full schedule. Got 2 biopsies done 1 week ago. Got a voice message from my PA to call her (the only other time she did that was to tell me about melanoma). One area was just fibrosis, but the second had a melanoma in situ. Good news, is the in situ part. She will do a wider excision in the next 2 weeks.

Now I'm wondering If I have that familial mole syndrome. I have lots of moles, freckles and of course sun damage from numerous sunburns growing up in sunny Las Vegas. I've probably had a dozen atypical moles removed before the melanoma as well as a basal cell cancer on upper back. Now I'm going to worry about my daughter who is 15. I scheduled an appointment for her and my husband for a skin check last time I went to Dermatology office,

The area that was the melanoma in situ was on the same leg as my melanoma and I showed that to numerous people-2 oncologists, the PA dermatologist, and the surgeon before I had my surgery in February. Again, no one was really impressed. The scary thing is I could point out many more moles that don't look that dissimilar to the one with the in situ! What to do about that? I did have my husband take pictures a couple months ago. I saw on Janner's page a link to some software to help you compare. Has anybody used it?

I have been following everyone's posts. Hang in there to those with current struggles and YEAH!!! to some good news!! I just love you all! Thanks for the words of encouragement, sharing your stories, the prayers and the knowledge! Just knowing you are all here is a real comfort!

 

Julie in Las Vegas

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jene8511's picture
Replies 16
Last reply 5/28/2011 - 11:27am

Hi Everyone..I will try to keep this as short and sweet and understandable as I can..

I am 25 years old and in April was diagnosed with .70mm melanoma clark level IV on my right forearm, about 5 inches from my wrist. I had a wide excision done before my SNB because my dermatologist scared the crap out of me. About 3 weeks later, I had the SNB, in which 2 nodes were removed. One pathologist read them, and found nevus cells, but sent them to boston for a second opinion. Second opinion from Boston comes back as having cells that resemble those of micro mets of melanoma. 

I went to Boston last week, and I will tell you, being in the health care field I was pretty taken aback that the surgeon basically said, well this is what we can do..(take out the nodes). My dermatologist feels very strongly about not doing it, saying it does not do any benefit. I found this study and I am intriqued. http://www.gmmm.com.ve/lectura/00000658-200906000-00021.pdf

It brings me to ask...do I really need to have this done? I feel as though they want to use me as a lab rat....take my nodes, see if anything is there..and then the course of treatment will be the same...( IPI was mentioned). I am trying to convinve myself I am not in denial, but that I am advocating for myself. I understand Boston is a great place to get the care, that this disease is nasty, and that they know what they are talking about. I also feel though, that they know more then they are telling me. 

I have a appt in 2 weeks with the surgical oncologist and the medical oncologist. The surgical oncologist offered to review my slides and discuss my case at their DR conference next week. I have heard horror stories about these, and I really just want what is best. I do not want to be over treated, or undertreated. Either way, my feeling is...if I dont do it, and something happens to show up elsewhere, I will still have to do IPI anyway. 

Has anyone elected NOT to do this surgery??

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lovingwifedeb's picture
Replies 19
Last reply 5/31/2011 - 12:07pm

My husband passed early this morning, May, 27th 2011

I want to thank all who gave me support on this discussion board when I needed to vent during the year of Bob's diagnosis. I have a lot of anger to sort through as caregiver to one beloved husband, father, brother and son who fought this battle with heart. I don't know if I will ever be able to forgive melanoma for what it's done to our family and to the heartfelt stories I have read. If I do nothing else for the rest of my life it will be to tell my husband's story to anyone who will take the time to listen to me and be warned of it's horrible dangers.

Diagnosed Father's Day, 2010, Unknown Primary
Staged at 3
Changed to Stage 4 when 1 tumor was found in Brain in January, 2011

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acyr's picture
Replies 12
Last reply 5/30/2011 - 9:02pm

I don't know if any of you have had an update on Sharyn lately.  I shared an e-mail with her hubby who is overwhelmed at the moment and obviously scared of what the future holds for our dear Sharyn.  He let me know what she had been removed from the Ipi trial as she has progression with brain mets.  She is having difficulty and hasn't been able to get on her computer.  I know Jim didn't want to be hit by a barage of e-mails, but thought that some of you would want to know.

Sharyn is a real trooper and has been such a positive influence on this board and our discussion forum in Canada.  I can say how many times she has reached out with information and support for others.  I know I don't have to ask all of you long-timers on here - but if you can put her in your thoughts and prayers and we will continue to hope that she bounces back from this as she has done from every other hurdle.

 

Annette  IIIb

Melanoma Network of Canada

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I don't know if any of you have had an update on Sharyn lately.  I shared an e-mail with her hubby who is overwhelmed at the moment and obviously scared of what the future holds for our dear Sharyn.  He let me know what she had been removed from the Ipi trial as she has progression with brain mets.  She is having difficulty and hasn't been able to get on her computer.  I know Jim didn't want to be hit by a barage of e-mails, but thought that some of you would want to know.

Sharyn is a real trooper and has been such a positive influence on this board and our discussion forum in Canada.  I can say how many times she has reached out with information and support for others.  I know I don't have to ask all of you long-timers on here - but if you can put her in your thoughts and prayers and we will continue to hope that she bounces back from this as she has done from every other hurdle.

 

Annette  IIIb

Melanoma Network of Canada

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killmel's picture
Replies 6
Last reply 5/28/2011 - 2:25pm

Just wondering how you are doing??? My prayers are with you both.

Doug

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carol b's picture
Replies 11
Last reply 5/28/2011 - 7:29pm

First of all I want to thank everyone for all of your prayers. You all walked beside me while i was taking my treatments. My goal was to get 10 bags and 10 bags i got. i should have skipped the last one but as my family says i am stubborn.  The side effects this time are minimal. Little itching and alot of confusion.My mental capabilities are only back to about half. I pray that isn't permanent. I go back on June 1 to see how many bags of the IL2 i can get. My goal is 5 because i don't want to over do it and not just be physically damaged but mentally as well. That scares me more than melanoma. After my 5th bag i didn't know who my husband was. The most wonderful man  in the whole world and i forgot him. Thats terrifying to me. I rather be dead than to no longer know him. So thats why im stopping at 5 bags. I have to do at least 15 bags  to stay on IL2 and so thats why im choosing 5 bags for my goal. I understand its only been 4 days since ive been home but my motor skills and my thinking are not what they should be, in my opinion. I have only 5 days left before i do it again. And im gonna need all the prayers i can muster to get thru this one. Thank you for walking this walk with me and even though you were not there thank you for holding my hand and praying with me. i know i got TONS of prayers this time because the walk was so much easier and peaceful. I just wanted to give you all an update and to thank you for praying for a stranger. May God be with you all as we walk thru this valley of death, , fearing no evil,, because we all know who is in control. But friends like you get me thru my day and for that i will say thank you again. May god bless you all and my prayers will not stop, i will continue to pray for you, The warriors and the caregivers.

carolb

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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dian in spokane's picture
Replies 10
Last reply 5/28/2011 - 5:43pm

I saw my oncologist yesterday and had pretty positive results for the scans I had on Monday. I am now over two years in remission, but for over a year of that there's been some medium SUV readings in my neck/throat area. The first time coincided with a bad lung scan, and all of it seemed related to a horrible bout of some flulike thing I had for weeks and weeks. That was sometime in January of 2010. Things have been better on all my scans since then, but there's always a little something lighting up in that area.

This scan, the SUV is actually lower, at 5.4  than the last scan (in Jan it was 6.1) but it has grown from 14 mm to 2 cm. They don't call this a mass or tumor, but refer to it as 'a fullness in the left tonsillar region which may be malignant'

So I'm going to see an ENT, maybe have a biopsy, maybe have a tonsillectomy, maybe neither..who knows. With my history I can't ignore the recommendation but neither my oncologist nor I really believe this to be melanoma. And no other signs of subQs or organ involvement, chest, pelvis, abdomen and extremeties all clear. 

Oh! and I convinced him that we can go out to 6 month scans! it will be nice not having to do all of that again for another 6 months. Now I just want them to deal with the throat thing in a timely manner so that I can be singing in time for festival season.

dian in spokane 

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slpinion's picture
Replies 15
Last reply 5/28/2011 - 9:00pm

YAY!!!!! Amen......I am SOooooo BLESSED!!!!

All my scans (PET / CT's / brain MRI) that were completed last week were negative.....thank you, Lord......there was no sign that the cancer had spread beyond the lymph nodes around the original melanoma site. Surgery to remove the remaining lymph nodes around the original melanoma site will be June 13, and then treatments (Interferon has been suggested) will begin soon after.

Sharon in GA
Stage III

~ Life may not be the party we hoped for, but while we're here we should dance. ~ (Unknown)

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Teodora's picture
Replies 8
Last reply 5/31/2011 - 3:28am

ScienceDaily (July 14, 2005) — HOUSTON - Curcumin, the pungent yellow spice found in both turmeric and curry powders, blocks a key biological pathway needed for development of melanoma and other cancers, say researchers from The University of Texas M. D. Anderson Cancer Center.

The study, to be published in the August 15, 2005 issue of the journal Cancer, but available on line at 12:01 a.m. (EDT) on Monday, July 11, demonstrates how curcumin stops laboratory strains of melanoma from proliferating and pushes the cancer cells to commit suicide.

It does this, researchers say, by shutting down nuclear factor-kappa B (NF-kB), a powerful protein known to promote an abnormal inflammatory response that leads to a variety of disorders, including arthritis and cancer.

The study is the latest to suggest that curcumin has potent anticancer powers, say the researchers.

"The antioxidant, anti-inflammatory and anti-carcinogenic properties of curcumin derived from turmeric are undergoing intense research here and at other places worldwide," says one of the study's authors, Bharat B. Aggarwal, Ph.D., professor of cancer medicine in the Department of Experimental Therapeutics.

At M. D. Anderson, for example, dramatic results from laboratory studies have led to two ongoing Phase I human clinical trials, testing the ability of daily capsules of curcumin powder to retard growth of pancreatic cancer and multiple myeloma. Another Phase I trial is planned for patients with breast cancer, and given this news of curcumin's activity in melanoma, animal studies will soon begin, Aggarwal says.

Ground from the root of the Curcuma longa plant, curcumin is a member of the ginger family. It has long been utilized in India and other Asian nations for multiple uses: as a food-preservative, a coloring agent, a folk medicine to cleanse the body, and as a spice to flavor food (two to five percent of turmeric is curcumin, for example).

While researchers had thought curcumin primarily has anti-inflammatory properties, the growing realization that cancer can result from inflammation has spurred mounting interest in the spice as an anti-cancer agent, Aggarwal says. He adds that another fact has generated further excitement: "The incidence of the top four cancers in the U.S. - colon, breast, prostate, and lung - is ten times lower in India," he says.

This work is just the latest by M. D. Anderson researchers to show how curcumin can inhibit cancer growth. "Curcumin affects virtually every tumor biomarker that we have tried," says Aggarwal. "It works through a variety of mechanisms related to cancer development. We, and others, previously found that curcumin down regulates EGFR activity that mediates tumor cell proliferation, and VEGF that is involved in angiogenesis. Besides inhibiting NF-kB, curcumin was also found to suppress STAT3 pathway that is also involved in tumorigenesis. Both these pathways play a central role in cell survival and proliferation."

He said that an ability to suppress numerous biological routes to cancer development is important if an agent is to be effective. "Cells look at everything in a global way, and inhibiting just one pathway will not be effective," says Aggarwal.

In this study, the researchers treated three different melanoma cell lines with curcumin and assessed the activity of NF-kB, as well the protein, known as "IKK" that switches NF-kB "on." The spice kept both proteins from being activated, so worked to stop growth of the melanoma, and it also induced "apoptosis," or programmed death, in the cells.

Surprisingly, it didn't matter how much curcumin was used, says the researchers. "The NF-kB machinery is suppressed by both short exposures to high concentrations of curcumin as well as by longer exposure to lower concentrations of curcumin," they say in their study. Given that other studies have shown curcumin is non-toxic, these results should be followed by a test of the spice in both animal models of melanoma and in human trials, they say.

###

The study was funded by the National Cancer Institute and the Department of Defense. Co-authors included principle investigator Razelle Kurzrock, M.D.; first author Doris Siwak, Ph.D. and Shishir Shishodia.

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Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by University Of Texas M. D. Anderson Cancer Center. 

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kbc123's picture
Replies 13
Last reply 5/30/2011 - 3:20pm

There has been so much negative, not so great news on here lately that I am finding myself getting depressed reading.  I read about this stuff and I pray for them.  I look into their files and see where they started, where they are now, what they treated with, hospice or no hospice.  And then I pray for them again.  A total depressed stage I have been living in...

Then I thought to myself, I AM doing well.  I HAVE no distant disease (God willing that will stay that way ).  Being Stage   3-A ( wishing I was 2 or 1)  is not so bad! 

My baseline scans are clean.  My three month check up with my surgeon was Monday and I am doing fine.  No lumps, no symptoms, no nothing.  Just the same ole me, with a diagnosis of MELANOMA... A melanoma survivor!

So that being said, I am going to finish my work today, I am going to get out in that humid air, sunny day (of course with loads of sunblock and a hat!) and I am going to have a fabulous Memorial Day Weekend.  I pray for the same for all of you  !

Peace and Love to all -

Kathy

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nickmac56's picture
Replies 2
Last reply 5/27/2011 - 3:03pm
Replies by: TracyLee, Vermont_Donna

 

Yesterday was my wife's first brain radiation treatment using the Cyberknife method. It went smooth as silk. The place (Swedish Radiology in Seattle) is quite impressive - high tech meets spa. The actual treatment itself is about 40 minutes. But there is a bunch of time for set up, radiologist and physicist sign-off of the plan and patient visual identification. She will have five treatments total. They have the room set up with flowers, nice furniture, music of your choice, and warm blankets to cover you up. But she is alone in the room when it all happens; the techs are in a control room just outside, and the door that gets closed is like a bank vault door - the walls in the room are two feet thick. From the control room they have three cameras and audio communication so they can track what is going on.

"Lenore" is the robotic delivery arm of the radiation. She has six axles and can essentially contort into any position around the head to deliver the beams. Meagan lay on a moveable bed. She is strapped down and wearing a mask (formed previously of a mesh polymer) to keep her head still. It's all computer driven based on the radiation plan. If she shifts even slightly or through her breathing her head moves, the bed and Lenore adjust. 

I reviewed the plan with the radiologist and he showed me the concentric rings of intensity they were using around the targeted area (the boundary of where her two tumors were removed during her craniotomy). They go after a bit of margin.
So far no ill effects. She is on steroids twice a day to control brain swelling throughout treatment and then will taper off them at conclusion of the treatment. No indication on the MRIs from last week of any cancer activity outside the known area.

She's home and feels fine, except she said she felt a bit fuzzy as the evening progressed (treatment ended at 5:00pm). The only expected other side effects are fatigue and headaches.

She has another treatment today, then three next week starting Tuesday. Even Lenore gets the Memorial Day weekend off.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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mimi0201's picture
Replies 2
Last reply 5/28/2011 - 9:21am
Replies by: Cate, Carol Taylor

     My husband has been deemed too weak for Yervoy and is now at home with Hospice care.  This has been a long journey with more to come. 

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Nebr78's picture
Replies 5
Last reply 5/30/2011 - 12:47pm
Replies by: nicoli, Nebr78, lhaley

I have had just two sessions of radiation on my spine.  Melanoma has eaten part way into the spine and also is up against the aorta????

Last night my stomach started burning and burning and couldn't get it stopped.  As I am also on light dose of chemo  I took an nauea pill as Pepsid AC, Pepto Bismo, etc.     Finally about 2:30a.m. I woke up and it had stopped.  Stomach still feels somewhat sore but don't burn.

I am due to have another treatment in about 6 hrs.  Will call Dr. soon as is early yet.    I will check this forum frequently next 4-5 hrs.

HAS ANYONE ELSE HAD THIS KIND OF PROBLEM???

 

( i have been taking quite a bit of pain pill for the back and I do know they work on the stomach.  Appreciate any reply.

 

 

 

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Nicky's picture
Replies 3
Last reply 5/27/2011 - 9:13am

I'm 45 years old. and I feel as if I''ve been on this cancer journey for so long ( x2 melanoma (1 node) 11 years NED, radiation therapy), other skin cancers (squamous/basal (28 years) and on a check up today, another suspicious mole that the hospital want biopsied.  I try to be upbeat but it just gives you a wakeup call to always be vigilent with this disease and to regularly get skin checkups even when you are this long NED. I love life and again whatever happens, I'm prepared for battle.  I believe in being positive and after losing  many loved friends on this board, I have to keep fighting for their sake and for me and my family.

I still believe that if you can get this disease early enough you have a good chance of survival, be vigilent. 

Thank you for being there all this time and for being the greatest support to me over all these years MPIP.

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