› Forums › General Melanoma Community › New.. Trying to understand
- This topic has 11 replies, 5 voices, and was last updated 7 months, 1 week ago by
Bubbles.
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- September 11, 2023 at 9:40 am
I’m hoping this posts in the correct space, apologies if it is not. I’m looking for information.My story is this. Two and a half weeks ago we began a journey through this. My sister discovered a lump in her breast. It grew very rapidly. Golf ball size in no time, then approximately 5 days later baseball size etc.
She was diagnosed with stage 3 triple negative metastatic breast cancer.You may be wondering why I’m here if it was diagnosed as breast cancer. After first biopsies that they said confirmed on a cellular level that it was breast cancer they now say she has metastatic melanoma.
She has headaches and worries about brain involvement. Has had PET,MRI, tons of lab work etc.
She began chemotherapy last Thursday. She was given adriamycin and cytoxan. She was fine till Saturday when her BP crashed (59/39) and she ended up in hospital with sepsis. She is currently being treated for that. Was supposed to have had a port today but that was cancelled due to the infection.
Everything I have found online gives a bleak outlook for the melanoma. She has no mole or lesion or anything (but does recall having a spot on her shoulder blade a year or so ago that simply went away after a few months) Testing does show a spot in her liver also.
The pets scan was base of skull to knees so the brain was not looked at..She was supposed to meet with the oncologist for information on this but is as I said in hospital. She was given this diagnosis by a Dr who said she consulted with her colleagues and they concurred it is metastatic melanoma.
She had tests, positive: SOX10, Melan-A
Negative: pancytokeratin, CK7ALSO, positive E-cadherin
Negative ER,PR,HER-2
notably GATA3 is positive in lymphocytes but remains negative in the neoplastic tumor cellsThe report concludes by saying the morphology and immunohistochemical profile support the above diagnosis.
So I guess in lieu of having a oncologist to ask I am asking here. Does this sound correct? Treatment for this? prognosis?
She began this journey with me as she was here on vaca a few weeks ago when we first went in. She has since returned home and is a thousand miles away.
If you could direct me to any information it would be much appreciated.
They have not given her a stage rating etc..
Thanks so very much
CS
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- September 11, 2023 at 12:36 pm
I am sorry that you and your sister are dealing with this. I find the report confusing as well, as it doesn’t really comport with a diagnosis of melanoma. Further, Adriamycin and Cytoxan are not appropriate treatments for melanoma though they may be for breast cancer. That said, there are plenty of cases of melanoma in breasts and elsewhere without a known primary lesion. Perhaps that is what your sister is dealing with, but most importantly she needs to see an oncology and possibly have her slides reviewed by a pathologist who is well versed in discerning the accurate diagnosis and providing an appropriate treatment for same.Here is a primer I put together on melanoma and the best treatments currently FDA approved for it that you may find helpful: Primer for Current Melanoma Treatments – New and Improved Version 2022!!!!
While the diagnosis of melanoma sucks great big green hair wizard balls, it is not the death sentence it once was when treated appropriately. However, data easily found on the internet is often behind the times as the earliest immunotherapy and BRAF inhibitors (BRAF status is something that should be reported out if your sister has melanoma) were only first approved in 2011.
As personal evidence (and there are many like me on this forum – though of late spam has taken the place of much dialogue) – I was diagnosed with Stage IIIb melanoma (cutaneous lesion to my back and positive nodes to right axilla) in 2003. Surgery was completed to excise both, but there was no other treatment as none existed. 2007 saw another cutaneous lesions with no positive nodes. More surgery – still no treatment. 2010 – melanoma mets to brain and lungs. SRS to brain. Surgery to lung. STILL – no approved treatments available though ipi was in trials. In December of that year, I was enrolled in a phase 1 trial of nivolumab. I and 33 other ratties were treated for 2 1/2 years, with my last dose in June of 2013. Though we now know we didn’t need to be treated that long, we did well! And I am still here alive and kicking, continuing to be NED for melanoma since 2010.
I hope this helps. The search bubble on my blog may be useful to you as well. I wish you and your sister my best. She is lucky to have you advocating for her.
Yours, celeste
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- September 11, 2023 at 1:13 pm
Im sorry I wasn’t clearer. The oncologist set up the chemo treatments thinking it was only breast cancer.The report showing she has metastatic melanoma came from the pathologist. The report came in Thursday, the same day as her first chemo.
This has all been rapidly happening. We went to uc concerned about the lump on 8.23 they sent us for immediate ultrasound.. they immediately sent us (now 8.24 as it was late day) for mammogram and they sent us for biopsies. Later that day we got a call saying it was pos for breast cancer.
She then returned home and we started a search for an oncologist. After being told we would have a month wait to get in at Siteman. Our contacts were able to get her right in at another place..
Days of testing followed…
Led to a breast cancer plan of chemo every 2 weeksx4 then every 3 weeksx4 then surgery, then radiation.. 1st chemo was Thursday, followed by pathologist report saying she has melonoma.
She was to see oncologist today to discuss but instead is in hospital.
So I’m trying to understand relationship between melonoma and breast cancer.
If melonoma metastases to the breast does it still show as melonoma or as breast cancer?
If it is melonoma causing breast cancer would the treatment be for breast cancer or melonoma?
Do people develop both concurrently?Do the test results mean anything definitely?
If she continues with chemo for bc will this effect the melonoma?
Can I assume the melonoma would need a different treatment?
Thanks so very much for your input and for sharing your story. I am sorry for all you have been through but so happy you are through it.
CS -
- September 11, 2023 at 8:05 pm
Melanoma anywhere is melanoma. Breast, brain, skin, intestines, bone, lung, etc. For example – my melanoma in my lung was melanoma. Not lung cancer. The primer I included a link to goes over current effective treatments for melanoma. Old school chemo (like the first dose your sister got) does nothing to melanoma. I don’t really understand the results noted as they are written. You need to be sure that they test your sister’s tumor for its BRAF status. (This is covered in the link.) Because the most effective current treatments for melanoma are immunotherapy and BRAF inhibitors combined with MEK inhibitors. HOWEVER, targeted therapy (the BRAF/MEK combo) only work in melanoma patients who are BRAF positive (about half of melanoma patients).I think reviewing the primer will help you understand and ask better questions when your sister sees an oncologist who is well versed in treating melanoma patients! And that needs to happen as soon as possible.
yours, c
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- September 16, 2023 at 1:47 am
Bubbles:
<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Melanoma em qualquer lugar é melanoma. </font><font style=”vertical-align: inherit;”>Seio, cérebro, pele, intestinos, ossos, pulmão, etc. Por exemplo – meu melanoma no pulmão era melanoma. </font><font style=”vertical-align: inherit;”>Não é câncer de pulmão. </font><font style=”vertical-align: inherit;”>A cartilha para a qual incluí um link aborda os tratamentos eficazes atuais para o melanoma. </font><font style=”vertical-align: inherit;”>A quimioterapia tradicional (como a primeira dose que sua irmã tomou) não faz nada ao melanoma. </font><font style=”vertical-align: inherit;”>Eu realmente não entendo os resultados anotados à medida que são escritos. </font><font style=”vertical-align: inherit;”>Você precisa ter certeza de que eles testaram o tumor da sua irmã para verificar o status BRAF. </font><font style=”vertical-align: inherit;”>(Isso é abordado no link.) Porque os tratamentos atuais mais eficazes para o melanoma são a imunoterapia e os inibidores BRAF combinados com inibidores MEK. </font><font style=”vertical-align: inherit;”>NO ENTANTO, a terapia direcionada (a combinação BRAF/MEK) só funciona em pacientes com melanoma que são positivos para BRAF (cerca de metade dos pacientes com melanoma). </font></font><font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>Acho que a revisão da cartilha ajudará você a entender e fazer perguntas melhores quando sua irmã consultar um oncologista experiente no tratamento de pacientes com melanoma! </font><font style=”vertical-align: inherit;”>E isso precisa acontecer o mais rápido possível.</font></font>
<font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>seu, c</font></font>
Dear Bubbles,
My wife is one of those who went through all these treatments that you discussed on your blog. In fact, she went through some that are not there, such as isolated limb perfusion (this one 3 times) and TIL. let’s go, in order:
1- Surgery,
2- ipilimumab,
3- nivolumab,
4- ipilimumab + nivolumab,
5- isolated limb perfusion (3x),
6- pembrolizumab + radiotherapy,
7- TIL (infiltrating lymphocyte therapy),
8- lenvatinib + pembrolizumab
9- relatinib + nivolumab (opdualag)
9- denosumab + nivolumab + relatinib (opdualag), 10- lenvatinib + denesumab + nivolumab + relaninib.She managed to obtain many of these treatments through clinical studies.
Well, she continues to progress and the only thing missing is the old chemotherapy. In this case, a triple-drug regimen containing cisplatin, vinblastine, and dacarbazine (CVD) was recommended. It is scheduled to begin in October.
I don’t know anything about these treatments, what do you think? patients who have already participated in everything (or almost everything) could try CVD chemical therapy).
The fact is that there is no longer any option for us. My hope is that this chemotherapy will be able to reduce the disease and Lenvima will then come in to stop the progression (of all the treatments above, Lenvina was the only one that managed to slow down the progression.
Thoughts:
We will survive.
We always survive.
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- September 18, 2023 at 12:39 am
Even with a rapidly growing tumor, I am shocked your doctors started chemo before the pathology arrived. I’ve heard of emergency radiation to stop a fast growing tumor but I distinctly remember my oncologist telling me could not treat my cancer even though they were “pretty sure” given my history it was melanoma. Treatments for different cancers are too distinct. Chemo is not effective on melanoma and prior to the introduction of immunotherapy, the prognosis *was* poor. But it isn’t anymore. Today it is CT, brain MRI, and often immunotherapy. And often, people live. No chemo. May I ask where you are located? This does not sound standard. Is immunotherapy not available in your country? -
- September 18, 2023 at 11:30 pm
Judi, if the post was addressed to me, I am located in the USA, in South Dakota, my sister is in St. Louis.They diagnosed her with stage 3 breast cancer and immediately started chemo.
Then further pathology reports came in saying they thought melanoma instead. (1st lab in SD. 2nd lab in MO)
The only thing I found that really stood out differently in lab reports was “notably GATA3 is positive in lymphocytes but remains negative in the neoplastic tumor cells”
Apparently that doesn’t mean much to anyone here. It likewise means nothing to me.
We are still waiting for results from the lab the biopsies were sent to that is supposed to give us a definite answer.In the meantime all treatments have been stopped.
Thanks
CS -
- September 19, 2023 at 8:24 pm
Results from genome came in today saying metastatic melanoma.
Meeting with oncologist first thing in morning.
From what I’ve read it will likely be stage IV or more.
I have noted to ask if BRAF testing was or will be done.
Any other questions anyone can recommend we may want answers to?
Thanks
CSI have read all of the attached links. Thank you.
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- September 20, 2023 at 11:27 pm
Thought I would update this in case anyone else is going through what we are.Although genomics report came back saying metastatic melanoma the oncologist thinks they are wrong. 2 different pathologists and 2 different opinions.
She is sending biopsies to a lab that has no connection to any place to get an outside opinion.
I never dreamed it would be this confusing trying to get a diagnosis.
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- September 22, 2023 at 10:00 pm
Jeez. I’m really sorry. How absolutely crazy and frustrating. Health care is filled with contradictions and leaps forwards and advances that seem like miracles and stupid mistakes and big blunders and very smart and educated people with different opinions. I hope you have some confidence in your diagnosis going forward soon. I wonder if you start immunotherapy in the meantime because it is effective in many types of breast cancer as well as melanoma. -
- September 23, 2023 at 2:43 pm
Sorry for what you are going through with the path report. I had the same problem when I was first diagnosed in 2003. The pathologists who reviewed my biopsy could not agree on the dx. Can’t even remember the alternatives. One was adamant that it was melanoma (he was right) 2 others had differing views. We sent my slides to expert at Harvard (who never even billed me) and he broke the crazy stating that it was melanoma for certain. Which of course started it’s own crazy. When you are dealing with these heavy diagnoses, it is so hard to have to deal with “one more thing”. I am sorry that this is happening. I hope they come to a correct and definitive diagnosis very quickly so that your sister can get the proper care she needs and on the road to recovery!Only upside is – since then, I feel like I am allowed to say – “I went to Harvard!” Gotta have a sense of humor with this crap, even though there are many days in which it is hard to find.
c
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