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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j.m.l.'s picture
Replies 2
Last reply 2/11/2012 - 9:48pm
Replies by: LynnLuc, Gsnowindlon

Just had several radical resecctions under my arm. Tumors had grown (1 fairly large) and were taken out.

Surgery was done on 1/30. How long does it take until I feel like me. Very tired and not up to par.

Also, RADIATION needed. What is that like. Any help on the side effects?? Any advice??

thank you JML

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annem's picture
Replies 5
Last reply 2/11/2012 - 8:14pm

My husband was first dx in 1998 with brain tumor treated with 15 rounds of WBR.  After a second brain tumor, stomach tumor, lung tumors, 4 rounds of biochemo and gamma knife, he has been cancer free since 2003.  He was diagnosed with radiation induced dementia in 2005 and had a stroke in 2009 which left him unable to walk without a walker and unable to talk.  He is only 58 years old.  About two weeks ago he began holding his head as though he was in pain and he has lost about 25 pounds since mid-December.  An MRI yesterday revealed no new tumor activity but an abnormal thickening of the brain at the back of his head.  The neuro is sending the MRI to the onc but tells me right now he is calling it an abnormal thickening of the dura - he says it may or may not be new disease.  He asked me if I had thought about hospice.  This has thrown me for a loop.  Although my husband has been unable to talk and had obvious comprehension issues, he knows me, he knows the kids, watches his beloved Okla State cowboys ... I told the doctor my main concern is that he not be in pain.  I'm not sure what this means but didn't know where else to turn.  I haven't posted here in a number of years but I always got great comfort in the discussions and suggestions.  Hopefully, someone will have dealt with this issue and can offer some advice.  Thanks.  AnneM, caregiver to husband, stage iv

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Anonymous's picture
Anonymous
Replies 5
Last reply 2/11/2012 - 6:34am
Replies by: Anonymous, Mike N, dian in spokane, MeNDave

Looking for opinions....I have been 5 plus years ned. Stage 3 male, with one large lymph node found under arm. I am on yearly follow ups and due for my next appointment in July. I've had intermitten night sweats in the past month or so (6-8 times). I feel great and have no other symtoms. Do I wait and see or contact my Doc?? Oh ya...one more thing....I had night sweats before my original diagnosis.....

Thanks for your help!

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aldakota22's picture
Replies 4
Last reply 2/11/2012 - 3:06am

  Been on Zelboraf since 9/12/2011.Are there any patients with a long history taking the drug out there?Bee  working as a miracle drug for me with  just nuicance side effects. What side effects have others had? Thanks for input

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Jeff's Mom's picture
Replies 20
Last reply 2/10/2012 - 8:53pm

After almost 1 year of being NED, my son has now developed tumors in both liver and lungs.  Although I don't post often, I am always checking out this board.  I am sure I will be posting a lot more since I have so many questions about the therapies Jeff may soon face.  This board is a great source of information, but also a great place to find hope and strength.  My son has those in abundance!

Jeffrey will be starting IL2 very soon, and I know Jane from Maine has a great on-line resource (which I scoured for information), but any other information about others' experiences with IL2 would be greatly appreciated.  Any complete responders out there?  We are so hopeful Jeff will be one of the lucky ones.  If not, we do have a system in place for further therapies (he has the BRAF mutation).  It's scary to think that this treatment won't work, but I guess that is what we have to face - what to do next if it doesn't work and how to do it fast.

I am interested in anti-PD1 trials - it looks very promising and seems less toxic than Yervoy.  I know Lynn is on an anti-PD1 trial with Dr. Weber at Moffit.  What are your side effects?  I know you are doing well...complete response?  Anyone else on anti-PD1? 

I guess I will try to post more often as we travel down this road...it's one I never wanted to be on. 

Thanks in advance,

Jeff's Mom

 

 

 

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justlittleoleme's picture
Replies 2
Last reply 2/10/2012 - 8:10pm
Replies by: fdess056, rbruce

My hubby finished his fourth ipi induction infusion yesterday.

The tumor testing came back and he is braf wild type.  Help me know what this means to us.

I think it means that there are no immunotherapies out there now that would help.  He has scans again on the 24th of February.

They are keeping watch on something in his left parotid now.  It is currently 6mm.  They aren't sure what it is.

Of course, they tell us the likelihood that he would get melanoma bilaterally in his parotids is highly rare.  I think that is where we live!

barb

We don't know how strong we are until being strong is the only choice we have.

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Maxximom's picture
Replies 2
Last reply 2/10/2012 - 7:20pm
Replies by: SteveBMe, yoopergirl

Today I got in touch with the Medicare coodinator and found out that NO approval is needed if you have "original Medicare" and NOT Advantage plan and that I was told incorectly that I was not "approved" and should have had my first Ippi treatment yesterday. Somehow the Nurses and doctor had the wrong infomation and communications were messed up. I don't know who was at fault..but it is over and after I gave her a pretty strong lecture about better communications.. I was able to schedule my first treatment for Monday...hoppefully all will go without a hitch. I have both Medicare and a Medigap policy.. this mess should not have happened. Please be proactive people!

Joan

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Had slnb and wide excision late January at Washington Hosp Center in DC; after initial stage one diagnosis received on melanoma on arm.

Just got pathology and surgery results. Negative on lymph node!!, no trace left after wide area lateral excision.

Initially was contemplating not having the SLNB done (as probability of spread was 5-10% given depth and status of melanoma initially taken out)

Decided to do it for 'peace of mind' reasons. Glad I did.

Though no guarantee of recurrence, I know; it is nevertheless much relieved.

Cant say enough good things about treatment to date.

From initial meeting in Melanoma Center with dermatologists Drs Vanna and Rutterman and surgeon Dr Boisvert to pre and post op care by nurses, other staff at WHC. All staff that I encountered pre/post op were well informed - and most importantly, were excellent communicators. 

Thank you all for answering my preop questions last month and your expressions of support.

 

 

 

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emilypen's picture
Replies 11
Last reply 2/10/2012 - 5:21pm

 

Just wanted to check in to announce the birth of our son Jamieson . Feb 3rd at 11:37 am via c-section ( baby was breech. 6 lbs 12 ozs at 37 weeks and 1 day.

Hospital was amazing in accommodating my husband with his wheelchair and my mom and caregivers... he got to be in the OR and held the baby before I did!

It seems like Jason has been saving all his energy to make it to the delivery date and now he is relaxed and letting nature take it's course. I'm sure it won't be long now but im so happy i got to share the last 5 years of my life with and that we got to create a new life together.

Emily

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mattsterama's picture
Replies 6
Last reply 2/10/2012 - 4:51pm

Okay here goes....Diaganosed with atypical nodular non-pigmented Melanoma on 1/13/12.  Surgery a week later with SNB, week later path came back negative.  Original in office shave biopsy showed depth of 1.85mm, however in the scope it looked to be very active at the bottom of the shave.  So assumed I would probably move to Stage II.  However the good news is the SNB came back negative and the excision showed no sign of the Melanoma, so due to depth I went back to Stage Ib.  Now my head is still spinning with the wait and see attitude that everything is telling me, diligent skin exams and regular checkups.  Is this it, after reading some posts I feel I have cheated and no big deal, but there is still a strong chance this thing will resurface elsewhere.  Just curious of other experiences and suggestions.  Even different health care professionals have different suggestions.  I really feel kind of crummy for asking due to many others who are fighting this disease much harder than I am.  However I know they are the ones with experience with it so I feel I have to ask, best to all and an advance thank you for any reply.

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heg50heg's picture
Replies 5
Last reply 2/10/2012 - 1:52pm

Hello, I was wondering if any one could tell me what kind of symtons one may have when melanoma returns or spreads. I am currently stage 3 after having a primary  rmoved from right arm in Nov. 2010, wide excision surgury and 36 nodes removed from armpit. Lately I have been having slight headaches and for the last 5 days or so some stomach dicomfort,especially after eating something. Fatige and feeling tired alot to as I can sleep for 8 to 10 hours and wake up feeling like I had just gone to bed. See my oncologist lat in feb. and almost feel I should see him earlier. Ct scan of chest and abdomen looked good just over 3 months ago.

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SteveBMe's picture
Replies 9
Last reply 2/10/2012 - 10:14am

Good evening all.

Well, it is now officially 8 years since my last recurrence (February 10, 2004 since my last surgery), and I cannot tell you how good it feels.

I remember coming here (the old BB format) in the middle or end of February 2004, to tell how I barely made it through my last surgery, and how sure I was I would be dead in some 18-36 months.

I just had my latest, now annual, scans-- whole body PET, and an MRI of the brain. I received the reports in the mail yesterday, and I am clean!!!!!!

In talking with someone at the local diagnostic radiology clinic the other day, they told me that more and more people are living longer, and actually surviving this nasty hate-monger-- MM.

While I've yet to meet any of them, it sure is nice to know....

Hang in there.... Hope exists.

Jesus lives!!!

Follow Jesus. That way, even if you do die, you'll live forever in paradise with the One Person who loves you enough to have died for you, and rose to conquer death so we can be justified before God.

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Kelli100299's picture
Replies 14
Last reply 2/10/2012 - 9:23am

Hi MRF Family  –

Just a question. I had the WLE/SNB done on 1/24/2012. The WLE was done on my inner thigh, and node removed from my groin. I would think at this point (2 weeks out) I would no longer be sore. The groin area is pretty swollen, like a huge egg under the incision, with pain going down to my knee. I guess being sore is kinda norma, however, this lump has me concerned. The WLE area is still sore as well. I am sure it doesn’t help that I irritate the area all day by sitting at a desk, but just to walk is painful, almost feels tight. No oozing or anything, so I am not thinking infection, but how long does the soreness, swelling and pain last? I have a follow up with my surgeon tomorrow.

Kelli

Life is ten percent what happens to you and ninety percent how you respond to it. Lou Holtz

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Richard_K's picture
Replies 2
Last reply 2/10/2012 - 8:18am
Replies by: Richard_K, boot2aboot

My creatinine level continues to climb and I'm wondering if any others have experienced the same.  I never really tracked it prior to going on Zelboraf, but since that time it has slowly continued to rise. I know it is a known side effect but I'm looking for some input from others on this board. My PCP wants me to see a renal specialist and I just want to be armed with any information I can get prior to that appointment. Thanks

Dick

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robbier's picture
Replies 1
Last reply 2/9/2012 - 10:19pm
Replies by: FormerCaregiver

Well its time again, and I am sure that when everyone has the PET/CT scan I for one get tired of all the test, I realize that the test is because of the  Stage III melanoma, that doesn't mean I still enjoy going and doing that test.  I go next week on Feb 15th for my first scan of this year.  The Dr. told my my cancer is in remission and I still thank God for this, and realize that according to Dr.s  they require the testing.  Oh well, once this first year passes, then the PET/CT Scan  won't be every 3 to 4  months.  My wish is everyone continues to do well and  to be encouraged.  I realize that sometimes its hard to encourage people when one is going thorugh the same thing, But that takes courage and faith.  The courage to stand in the face of fears, and the faith it takes to help others inthe same situations or simaliar situations.    I would like to leave all of you with this, Psalmas 120:1  In my distress I cried to the Lord, and He answered me.  God does hear and helps us if we will allow  Him to do help us and be our champion. 

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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