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October 25, 2012 at 5:21 pm #20710
Hi All; I’ve been posting on the newly diagnosed forum and now it’s time to move to Stage 4 Forum.
I have had a lesion removed from my right scalp just above the right ear. Here’s the diagnosis from the Pathology lab.
Malignant Melanoma, Nodular, Breslow depth of at least 3mm, Clarks level at least 4, Ulcerated, 15 Mitosis per Millemeter squared. Malignant Melanoma extends diffusely to the deep margins and to within 0.1 mm of the peripheral margin.
I’ve had x-ray that shows a medium and large (4mm) nodules in the lower left lung.
I’ve had a PETSCAN that shows those two nodules in the lower left lung and two much smaller ones in the upper right lung. Nothing in the liver or spleen.
Because of the PETScan results my surgeon has postponed doing a Sentinal Lymph Node Biopsy and additional exscerion of the lesion field that would require a skin graft.
I’m having an MRI scan of the brain tomorrow with hope that there is no cancer in the brain.
I’m having a CATScan guided needle biopsy of the larger node in the lower left lung on Monday. My Medical Oncologist at Cancer Care of Illinois believes that the node is a melanoma cancer and if so he will prescribe a treatment that is specific to Melanoma. He gave the name of the medicine but I did not do due diligence and right it down. I will in the future.
My Medical Oncologist has offered to work with me to get a second opinion once we have the results of the MRI and the Needle Biopsy of the nodule in the lung and he has decided on a treatment.
He has suggested Dr. John Clark at Loyola University in Chicago or MD Anderson in Houston, Texas.October 25, 2012 at 6:43 pm #57127
I would go where the research is happening. MD Anderson would be better in that instance. Is he planning on Yervoy or Zelboraf? Are you BRaf positive? Let us know what you find out and be sure to consider a clinical trial.October 25, 2012 at 10:08 pm #57128 Depending on the results of the CATscan guided needle biopsy of the nodule in the lunge is to determine if the melanoma has moved to the lungs. Dr. Geoffroy stated that if the nodule is melanoma he was going with Zelboraf first. I’m not sure what you mean by BRAF positive.October 25, 2012 at 10:10 pm #57129 Dr. Geoffroy says I am not a candidate for clinical trial because of the second cancer (prostate cancer).October 27, 2012 at 11:09 am #57130buffcodyParticipant If he’s going with Zelboraf first, it must mean that you are BRAF positive. 50% of melanoma tumors approximately manifest the BRAF gene. The treatement in question can only work with those who are BRAF positive. I’m BRAF negative, sometimes spoken of as BRAF wild, which means that treatment is not an option for me. As a matter of fact, they are reexamining my tumor material to make sure the right call was made originally, since being BRAF positive opens up more treatment options for one who is. There seems to be a gathering consensus (I am sure not universal or necessarily correct) that many people who are BRAF positive are helped by using Yervoy (or some other therapy) prior to Zelboraf. But that does not at all mean that the recommendation made to use to start on Zelboraf is not the correct one. Just that it is not a slam dunk to use Zelboraf first on all BRAF positive patients. It sounds as if they have ruled out surgery as an approach for most of those tumors.October 27, 2012 at 11:29 am #57131 Soon on the horizon for BRAF positive folks is the GSK Braf/Mek dual therapy which has shown a more durable response than zelboraf. Approval is pending with the FDA but hopefully should come in the next few months. Yes, being BRAF positive opens up more therapies. Yervoy is an immunotherapy and is akin to the PD1 immunotherpy which is in clinical trial. I highly recommend the webinar series we have, click above in the section to learn from the experts. BLUEOctober 29, 2012 at 6:58 pm #57132 Hi Catherine Poole;
Just got the results of the MRI of the brain. I have six small lesions scattered all over the brain. Surgery is out. My Dr. has scheduled me for radiation treatment on Wednesday. Could include gamma knife.
It just keeps getting better.
Had the CATSCAN directed needle biopsy this morning. Won’t have results for 2 to 3 days. For what it’s worth, that proceedure was basically painless. Guess they gave me enough anethesia that I didn’t feel it. Having some slight pain now and I had a small collapse of the lung but that should not be a problem.
Things are not looking to bright. 4 lesions in the lungs and 6 in the brain.
Not sure I have time for a ‘Second Opinion”. Things happening very fast.October 29, 2012 at 9:37 pm #57133
Dr has me on Desamethasone “2mg” prior to the radiation therapy on Wednesday. Started today.October 29, 2012 at 10:57 pm #57134 Sorry that’s Dexamethasone.October 29, 2012 at 11:03 pm #57135 Gamma Knife is the preferable treatment for brain mets. I hope you are in a good center. The BRAF therapies can work quickly, so I would ask about your BRAF status. I’m so sorry for you to have to endure this but happy you have found us. Keep us posted. (Dexamethasone is a steroid to help with swelling)October 29, 2012 at 11:28 pm #57136DadZGirlParticipant Hi,
Even if your BRAF mutation is BRAF Negative Wild Type you can use Yervoy. My Dad successfully completed 4 infusions and it did help him. It is important to find out all that you can as quickly as you can and then relay it here so Catherine and the others can help you. I would never have known what to ask if I hadn’t found this forum and this support community. Please don’t despair, ask questions and if you don’t get answers keep pushing.
Thinking of everyone here and how hard they are working to help each other.
LauraOctober 31, 2012 at 2:20 am #57137SMLinkParticipant
Let me start by saying , I am so sorry to hear of your recent change in diagnosis. I am also a IV melanoma patient and your story hits very close to home , as it has progressed similar to yours. I am pretty certain we may be able to help one another. I am a 45 yr old mother of 2 boys 7 and 10. Diagnosed just this past June . My mantra from the beginning has been Pray and Fight. I am ready to help others as much as i can to have HOPE and Fight like you never have before. Please email me directly if you would ever like to chat and I certainly can hope you have a good support system at home. I remember being where you are right now with all the discussions of treatment options and test results ., it is so overwhelming . It sounds like your oncologist is on it. I wish you the best and Hope that you are ready to FIGHT !! You are worth it !!!November 1, 2012 at 3:57 pm #57138 Had my consultation visit with the oncology radialogist yesterday. Since I have 6 small lesions in the brain they are thinking up front that I should have a whole brain radiation series. The oncology team is meeting today to review my case and determine if I am a candidate for Sterotactic Radial Surgery. Up front they are hesistant to do that because of having 6 lesions. They usually don’t use Sterotactic on more than 2. Even though the treatment is targeted, there is still some spill over and the more lesions you have the greater chance for damage to the brain. I go back tomorrow to have my mask fitted and get markings. They will be using the MRI I had last week and the results of a PETSCAN they will do tomorrow. Depending on which way we go I could be starting treatment on Monday.
I am also triggering a 2nd opinion at M.D. Anderson on Monday.
I’m 68 years old, married to a wonderful gal, have 3 children and 5 grandchildren. My wife and I are meeting with the 3 kids this Saturday to go over the Bucket List. I have lots of prayer support at my Church and in my community.
As I told the oncologist yesterday. I won’t give up and they are going to have to tie me down till this thing ends.November 2, 2012 at 3:46 am #57139SMLinkParticipant
I just finished 14 day whole head radiation last Friday for 7 different metastasis in my brain. It really isn’t so bad . The mask making was the worst for me because I am claustrophobic but an anti anxiety pill certainly helped. The radiation treatment was only a 5 minute/ day for 14 days. A little tiredness to be expected but they gave me a steroid during treatment to keep swelling under control and that actually gives you energy and an appetite. I wish you the best with your treatment plan and will include You and your family on my prayer list. So happy to hear you are a FIGHTER and have great support from your church and family. Enjoy every moment with your loved ones!!!!
ShelleyNovember 2, 2012 at 12:09 pm #57140
Going in for my mask today. I’m on 2mg Dexamethosone twice a day now for swelling. I will find out if the treatment will be whole brain or sterotatic radial surgery.
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