Newly diagnosed Stage IV

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9/10/2010 3:22pm
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Replies: 17

I just got back from my Pet scan.  Not so good news.  I went from stage IIIC to stage IV.  The scans showed the mel has spread to my spine.  That does not sound like a good thing.  I have previously tested positive for the B-RAF mutation so my Oncologist is signing me up for the BRAF trial.  Hopefully that will start in a few weeks and will help shrink this beast.  Gee, I was just starting to feel better after completing my radiation treatment on 8/31.

Any thoughts and prayers would be welcome at this time.   Add another stage IV warrior to the list.  Hoped I would not join that list, but oh well, what can you do.  Mel is going to do what it wants, but I am working to kick his butt as best i can.  Time for a little more crying before I get on with my life.

Bill from Illinois Stage IV Spine Mets, brain mets ans subq mets. starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

Hi Bill,

  So sorry to hear this news......dont give up, keep on fighting!!!

Vermont_Donna

Fen - (9/10/2010 - 6:41pm)

Shoot, Bill, I'm sorry.  Will keep you in my thoughts and prayers.  Please keep us posted.

Fen

Linda J - (9/10/2010 - 7:04pm)

Bill, I'm sorry to hear that.  You're in my thoughts and prayers as you gear up for the next stage of the fight.  Keep fighting! It is possible to win!

babybluiz - (9/10/2010 - 7:16pm)

I am so sorry bill, My thoughts and prayers are with you and your family. Braf is a good drug, had my husband not been taken off I truly think he would still be here. He had 75% reduction on his first cycle of the drug. I hope you see similar results. Keep us updated

Laura

King - (9/10/2010 - 9:41pm)

Bill,

When you say that the melanoma has spread to your spine, do you mean the bones (vertebrae) or the spine itself?  Well, either way there is hope.  This is coming from a person who has been Stage IV for 5 years now.  Hang onto hope and take one day at a time.  As you know, some warriors have had great results with the B-RAF trial.  Be your own advocate.

 

Stay Strong
King

Stage IV 7/05 Liver mets

bill58 - (9/10/2010 - 11:07pm)

I guess it is 3 different spots in the bones.  I don't know if he said it was in the marrow or not.  I think you understand how hard it is to understand and remember everything when given news like that.

Bill from Illinois
Stage IV Spine Mets, brain mets ans subq mets.
starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

It is soo hard to hear the word progression.  I am sorry you are dealing with this.  I do pray for everyone dealing with cancer and those on this message board.  It is a very good thing you are BRAF + that is one more thing to try to outwit this beast...... Good luck with whatever option you choose and keep us posted.

 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

lhaley - (9/10/2010 - 11:54pm)

Bill,

So sorry you've had to join those of us at stage IV.  You do sound like you've adjusted quite quickly and are ready to fight.

Wishing you the best and hope that the b-raf trial makes those cells go running away!!

Linda

JuleFL - (9/10/2010 - 11:58pm)

Wishing you success with Braf.  God Bless.

Oh, I have slipped the surly bonds of earth and danced the skies on laughter-silvered wings.........put out my hand and touched the face of God.
John Gillespie Magee, Jr

ValinMtl - (9/11/2010 - 12:07am)

Bill, I'm so sorry you have joined us.  I'm still shell-shocked...does that ever go away?  B-RAF sounds promising...that was my first choice but alas I'm negative..so next week, it will be ipi.  Stay strong...continue living life to the fullest...take a deep breath in...ahhh isn't life grand..enjoy each and every day.  Val xx

Live Laugh Love
Nothing is worth more than this day!

Jim M. - (9/11/2010 - 9:09am)

Hi Bill,

 You are in my thoughts and prayers.

 Jim M.

emilypen - (9/11/2010 - 10:16am)

Hey Bill,

My husband also pregressed from IIIC to stage IV with mel in his spine. He has 4 spots... He tested positive for B-RAF as well but was randomized to the dacarbazine arm of the Roche study.

Our oncologist has him starting a new study on Wednesday: http://clinicaltrials.gov/ct2/show/NCT01155453, it's a combo study that targets both Mek ( which is in the B-RAF pathway) and the P13K pathway... our fingers are crossed.

He too, did a week of radiation to help with the pain and I can't tell you what a difference that made... wow. He feels so much better.

Stay Strong!

Emily

HI Bill, 

I too joined the stage IV club this last April.  I had lung mets which were removed but then I metastized to the pleura.(I can still never spell that word correctly...!)  

I started the Roche Braf trial in June and was randomized to the b-raf arm.  So far so good.  At 6 and 12 weeks the tumors showed that they were shrinking.   My side effects have been tendon pain which has moved throughout my body twice.  Now during week 13 I have just realized I have not really had any pain!  I had a severe rash the second week,  and fevers the first month.  All have basically subsided.  

I pray that you are able to get the treatment you want and that you continue marching forward with courage and strength.  

Shelly in SW

Dear Bill,

I am very sorry to hear about your latest news. I had my husband read your post and your bio. I know it worries him, moving from stage 3 to 4 and the two of you are quite similar, and my husband seems to relate to you. He reads more on the discussion board now so I am hoping he gets braver about exploring his feelings there more openly.

I'm glad you have an action plan to go forward as I know it makes a difference in how we face each day when we wake up in the morning. Now matter how you decide to fight this disease, take time to love your family.

Take care, Deb

loving wife to Bob, stage 3c

bill58 - (9/12/2010 - 8:44pm)

Deb,

If you or you husband want to contact me directly to talk about anything, feel free.

We all come wo this board to get information, and maybe some compassion from others when we get bad news which unfortunately will happen from time to time.  I am hoping for some good news in the near future.

We are all here to help each other fight this beast as best we can.  Nobody can do it alone and the doctors don't always seem to be forthcoming with all of the information and options that we need.

I saw another post today that said something about people with BRAF getting reoccurances in the brain after 8 months.  I have never heard or read anything about that and hope that that was just an isolated incident with one person who was on the drug.  I was hoping it would be the wonder drug we are all looking for and that I would fall in with the lucky percentage that get shrinkage and remission from the trial.

Bill from Illinois
Stage IV Spine Mets, brain mets ans subq mets.
starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

Hi..Im 35 and also just diagnosed with mel stage IV. I also feel scared and wonder why me? I meet with a clinical trial doctor to discuss my options. My pet scan said it spread to my lungs and in my lyph nodes. All from some stupid mole that was melanoma 3 yrs ago and it returned w vengeance. Hang in there..hopefully we both get the treatment to fix us...good luck buddy...i just joined here 2 wks ago...talk to ya soon

cstratos - (9/12/2010 - 9:19pm)

I am 45 just diagnosed with Stage IV.  I tested positive for the B-RAF. I have been in the PLX4032 trail for seven months. My tumors have reduced by 54%. I do have side effects - loss of hair, skin rash, night sweats, nausea and diarrhea. But, all in all, not bad relative to what I hear about IL2.   I am hoping this will be the magic pill and make this melanoma go away, but I know I must be prepared to have an arsenal of back-up plans in order to reach the finish line. I believe we are close to finding a solution to this disease. It is just a matter of time and the goal is to maintain until that cure comes along.

Keep the faith.  Remember, some days are hopscotch kind of days, some days are like "getting nailed at dodgeball" kind of days. Just keep moving forward with a smile.

Fighting Melanoma