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October 12, 2012 at 12:03 am #20680
my 21 year old sister was diagnosed with nodular melanoma on the 23rd Sep , the mole was on her face just above her left jaw . her diagnosis was : polypoid nodular malignant melanoma , with berslow depth of 3 mm , clarks level IV , surgical margins are free of tumer , closest lateral margin 1,2 mm deep. there are foci of regression (less than 75% of the tumer) and moderate peritumoral lymphocytic infiltration . there are signs of imminent ulceration . Mitotic index : 10 mitoses (1 square/mm) , KI 67 proliferation index between 50 – 70 % (changing by different areas) .
She (Sarah) my sister has amazing spirit, she is a very energetic full of life girl and deserves to live , i dont really understand the numbers , but i’ve been reading a lot and i understand its dangerous and scary, i got to see this forum by coincidence , help me understand the numbers , the possibilities, the chances , i’m getting a nervous breakdown.
Her blood tests including the CA group all came clear, her LDH level is in range , her CT scan was clear , she will performing a WLE along with SLNB next week , both her oncologist and her surgeon were optimistic as her general health is great as well that she has no swollen nodes at all ..
Help me and pray with meOctober 12, 2012 at 12:14 am #56932
I can imagine you are having anxiety over this. Your sister is at high risk with nodular melanoma. But we don’t know a lot until she has the SLNB. When those results come in there should be better footing. I would look at clinicaltrials.gov for some of the stage 3 clinical trials, especially the Mage A3. You can keep busy with this homework as adjuvant therapy (therapy to take care of stray cells, etc to prevent a recurrance) will probably be considered. We can help you on this journey, and you will recieve great support from the folks here!! Your sister is lucky to have you! Take good care.October 13, 2012 at 7:01 pm #56933 Thank you for the support ! i need it , i’m loosing my mind here , so is she stage 3a not t3b according to the breslow , i’m so worried but her doctors seem more relaxed than me and assure me not to panic but i cannot help it , she’s my life , i’ve dedicated my life to her since she was born .
I live in Israel not the US , im not sure if they have the same clinical trials as the States .
According to her doctor , the tumor was totally removed but the WLE and the SLNB just to make sure nothing is left , i wanna believe that , i wanna believe she’ll over come this and look at it as a bad memory , she’s very healthy over all and no signs of anything shows on her but a slight scar where the melanoma mole was , what are her survival rates , She will be ok , i know she will , i should have the power of believing so , pray with meOctober 13, 2012 at 8:03 pm #56934YankeesGirlParticipant
I am sorry that you and your sister are going through this. Your sister is very blessed to have you in her life. I have two wonderful sisters who are sharing in my melanoma journey as well. The best advice that I can give to you based on my personal experience alone is to seek a second opinion if possible and trust in your doctors. Every case is different. Wishing you and your sister well!October 15, 2012 at 12:16 am #56935krissy424Participant
I will pray for your sister. She has much to do on this earth.
KrisOctober 16, 2012 at 11:00 am #56936
Thank you all for your support , you are the only ones i can speak with about this issue .
I’m still confused , the surgery of the WLE and the SLNB is not scheduled yet , i know that her original tumor was totally removed through the full excision she had earlier , but still i’m terrified that the other needed procedures are taking too long . My question as she had nodular melanoma , does that mean that the tumor is still growing even though it was removed or is it only checking the case of the lymph nodes.
Kris you are absolutely right , she has a lot to give to this world , she’s amazing girlOctober 16, 2012 at 12:02 pm #56937
The worry now would be the possibility of microscopic metastasis in her lymph nodes or in her blood stream. The Sentinel Lymph Node biopsy is an important staging tool and may indicate further surgery of the lymph nodes if there are any nodes that are positive. I would ask the doctor to test her for Mage A3 since that is a promising therapy for stage 2 and or 3 that may get approval soon. You have to test positive for it, about 70% of folks do. I would also push them along on getting the SLNB done!November 4, 2012 at 1:21 pm #56938 My friends , apologies for my silence but i had my hands full in the past couple of weeks , Sarah did the WLE and the SLNB on the 18th of October , unfortunately cancer was there in the lymph nodes , on the 30 of October , she underwent right neck modified radical dissection (an L shape from her ear lope down to her neck) . she was released out of hospital today , i have to say she’s recovering very well thanks to God , of course she has numbness in he right side of her face , her smiling nerve was damaged during surgery , they had to compromise it , still my Sarah can smile , a bit lopsided in the lower lip but other than that everything else is fine . she also cannot really chew anything , she only can eat softy food , the first days i used to bathe her and feed her , today she did it herself she does appear to have a double chin now (is that Normal??? ?) that even the left side of her face is swollen a bit ????
She is still tired of course , yet better every passing day .
She has amazing energy and ready for the next step of her therapy which will be in 2 weeks from now i guess .
Next week she will take off the skin clips , after that Sarah will start Radiation for 6 weeks . and then she will start taking a Vaccine developed by Hadassah Ein Kerem (our hospital in Israel) that is like interferon , yet without the side effects of interferon . I asked about Mage 3 , they have it here but the oncologist recommended the vaccine as she’s working with it for so long now and she trusts its even better .
I just hope this will be the end of this vicious disease , and she’ll be back to her normal life ASAP as she had to drop out of school in order to focus of her treatment .
Any tips , advice, recommendations at this point is highly needed and appreciated
I don’t know why but i feel better at this point and my hopes are very high of her being NED soon .I keep the faith and forever and ever I prayNovember 4, 2012 at 2:29 pm #56939
another inquiry ? neither the surgeon nor the melanoma oncologist asked for any CT scans , MRI or PET scans , is that normal ? should i push for this or what ?November 4, 2012 at 6:45 pm #56940 She may want to get an MRI/PET/CAT scan of her body as a benchmark. I would still pursue the MAGE A3 if she is positive for it. Vaccines have not been proven very promising so far for melanoma. If she has access I would push further. You are a wonderful sister to bring your sister back to good health by loving care. Keep in touch.November 16, 2012 at 1:22 am #56941 Catherine , for a change i have good news , after the radical neck dissection that Sarah had, pathology results showed no evidence of Melanoma neither in the skin around the original tumor neither in the 20 lymph nodes they took out
I feel way better as i hope this means she has better chances of cure and overall survival , it does .. right ???????
she will still go for radiation soon when her wound heals well , she’s happy about the news , i just hope she just gets happier and happier and definitely NED very soon
As always forever and ever I pray !November 16, 2012 at 12:55 pm #56942
Thanks for the good news about your sister. I hope she remains NED too. So she is having radiation as a follow up therapy? I am afraid there is no guarantee with this disease but no positive nodes is always a good sign. Keep in touch.November 17, 2012 at 6:14 pm #56943 Yes , Radiation will be a follow up therapy , it will start within 2 weeks , then a special vaccine and regular check ups every 3 months
I know Catherine that there are no guarantees with Melnaoma but our guarantees is the power of believing, knowing Sarah’s diagnoses then having clean nodes this is a miracle for me and i’m a strong believer in God , you should have seen the doctor when he delivered the news , he couldn’t believe it himself
Here is a link about Dr. Michal (Sarah’s oncologist) vaccine , hope it can be of help
As always forever and ever I pray for Sarah and for everyone across this earth facing this ugly disease ..April 29, 2013 at 5:49 am #56944PentiumIVParticipant
Ella Institute in Tel Hashomer (Sheba hospital), Israel is an awesome melanoma team lead by Prof. Jacob Schachter. This is definitely a world-class team that does TIL among other things. As for the clinical trials- they try to get as much as possible. A very important point is an integrated approach to treatment.
P.S. I am being treated there for Stage IV BRAF- positive melanoma with unknown primary.
The team at Hadassah hospital is also good.
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