› Forums › General Melanoma Community › Ok running out of options for Mum – why does this have to be so rare?
- This topic has 28 replies, 8 voices, and was last updated 13 years, 5 months ago by
jag.
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- August 13, 2011 at 7:19 am
Hi all,
I probably posted on this bulletin about 2 months ago about my Mum.
Since then she has a full course of radiation on both the large tumour on the L4 of the spine as well as the spot at the top of the leg.
On Thursday (today is Saturday in Australia) she received her ct-scans. It has been about 6 weeks since the radiation and Mum decided to have her ct-scans early as she started getting a bit of pain back.
Hi all,
I probably posted on this bulletin about 2 months ago about my Mum.
Since then she has a full course of radiation on both the large tumour on the L4 of the spine as well as the spot at the top of the leg.
On Thursday (today is Saturday in Australia) she received her ct-scans. It has been about 6 weeks since the radiation and Mum decided to have her ct-scans early as she started getting a bit of pain back.
The scans were not good. Although they didn't reveal any extra spots, it appears the large tumour and the spot on the top of the leg have not been affected by the radiation at all. There may be an indication also that the tumour has grown slightly.
We're (being Mum, Dad and me) are going to the oncologist on Tuesday. Mum is feeling very negative at the moment which is absolutely heartbreaking for our family.
BRAF results came back negative….oncologist also has c-kit results but hasn't told us yet which is making us think that it's negative, so Gleevac is probably a no go.
So basically it's a non-skin related melanoma, no primary (unknown primary) with no c-kit or braf mutation.
Where to from here? Surgery is still not an option. Dad and I have desperately tried researching options and contacting researchers from the US, China (including Dana Faber etc.), and no-one has replied.
Feeling very desperate now. Does anyone have any suggestions? Your help would be incredibly appreciated.
Cheers from Australia,
Ashley
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- August 13, 2011 at 11:04 am
Hi Ashley
Unknown Primaries affect about 7% of the Melanoma population. It is believed that the Primary regressed when the bodies Immune system got rid of it but cells spread before it disappeared. Our son's Melanoma 1st appeared in a face gland.
i noted from one of your previous posts that you mentioned the Doctors had said the Tumor tested positive for CKIT. If that is the case then Gleevec would be a good option. Yervoy has just been approved in Australia so that could be an option. It was formally known as Ippilimumab. The other new drugs in Trials are E7080 which is available in Australia or Anti PD1, i am not sure if that has started here yet it is a monoclonal antibody like Yervoy but appears to have less side effects.
If you need other opinions in Australia you could contact Peter McCallum Cancer Centre in Melbourne or The Melanoma Institute Australia in North Sydney. Unfortunately only certain Trials are available at each Institution so when one says we have nothing more to offer you have to enquire at another Institution to see what they have available.
best wishes
James
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- August 15, 2011 at 6:36 am
Hi James,
Thanks so much for your response. Will definitely look into the treatments you have suggested.
It's seems so incredibly frustrating in an amazingly wonderful country like Australia that the doctors (and hospitals) don't seem to be keen to talk to each other about a patient….my Dad and I will be seeing the oncologist again tomorrow along with Mum of course, and we will be pushing for whatever we can (we have a plan of attack!). We have all the treatment/location suggestions from this post printed out and ready to go! I will definitely also get in touch with the 2 centres you have recommended.
Thanks again for your assistance.
Cheers,
Ashley
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- August 15, 2011 at 6:36 am
Hi James,
Thanks so much for your response. Will definitely look into the treatments you have suggested.
It's seems so incredibly frustrating in an amazingly wonderful country like Australia that the doctors (and hospitals) don't seem to be keen to talk to each other about a patient….my Dad and I will be seeing the oncologist again tomorrow along with Mum of course, and we will be pushing for whatever we can (we have a plan of attack!). We have all the treatment/location suggestions from this post printed out and ready to go! I will definitely also get in touch with the 2 centres you have recommended.
Thanks again for your assistance.
Cheers,
Ashley
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- August 13, 2011 at 11:04 am
Hi Ashley
Unknown Primaries affect about 7% of the Melanoma population. It is believed that the Primary regressed when the bodies Immune system got rid of it but cells spread before it disappeared. Our son's Melanoma 1st appeared in a face gland.
i noted from one of your previous posts that you mentioned the Doctors had said the Tumor tested positive for CKIT. If that is the case then Gleevec would be a good option. Yervoy has just been approved in Australia so that could be an option. It was formally known as Ippilimumab. The other new drugs in Trials are E7080 which is available in Australia or Anti PD1, i am not sure if that has started here yet it is a monoclonal antibody like Yervoy but appears to have less side effects.
If you need other opinions in Australia you could contact Peter McCallum Cancer Centre in Melbourne or The Melanoma Institute Australia in North Sydney. Unfortunately only certain Trials are available at each Institution so when one says we have nothing more to offer you have to enquire at another Institution to see what they have available.
best wishes
James
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- August 13, 2011 at 12:26 pm
It states in your profile and in your first post that she is C-KIT positive, now the docs are saying she is not?
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- August 13, 2011 at 12:39 pm
Ashley,
Dana Farber have been slow in responding because they were in transition recently-since February they moved to the new Yawkay building-and somewhat still not very organised.
Contact Dr.Hodi's /The Melanoma Oncology Director/ Assistant Natacha Hyacinthe directly on her E-mail:
Natacha Hyacinthe
Administrative Assistant
DF/HCC
Dana-Farber Cancer Institute
44 Binney Street
Boston, MA, 02115
Phone: 617-632-4715 Fax: 617-582-7992
[email protected]and she will be able to assist you with arranging an appointment.She is very helpful.
Good luck to you and your mom.
Teodora
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- August 13, 2011 at 12:39 pm
Ashley,
Dana Farber have been slow in responding because they were in transition recently-since February they moved to the new Yawkay building-and somewhat still not very organised.
Contact Dr.Hodi's /The Melanoma Oncology Director/ Assistant Natacha Hyacinthe directly on her E-mail:
Natacha Hyacinthe
Administrative Assistant
DF/HCC
Dana-Farber Cancer Institute
44 Binney Street
Boston, MA, 02115
Phone: 617-632-4715 Fax: 617-582-7992
[email protected]and she will be able to assist you with arranging an appointment.She is very helpful.
Good luck to you and your mom.
Teodora
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- August 15, 2011 at 6:39 am
Hi Teodora – thank you so much for your information. Dad and I have been trying to get in touch with Dr Hodi for a while now.
We're located in Australia but we are (and by saying that, my Mum obviously!) more than happy to do whatever it takes to get some action – if that means travelling to the US, so be it!
Thanks again for your help, incredibly appreciated.
Ashley
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- August 15, 2011 at 6:39 am
Hi Teodora – thank you so much for your information. Dad and I have been trying to get in touch with Dr Hodi for a while now.
We're located in Australia but we are (and by saying that, my Mum obviously!) more than happy to do whatever it takes to get some action – if that means travelling to the US, so be it!
Thanks again for your help, incredibly appreciated.
Ashley
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- August 13, 2011 at 1:12 pm
Ashley,
On a second reading I am somewhat confused.You mentioned your mom's melanoma is C-kit positive therefore doctors are assuming is either mucosal or acral.Then you mention she might be C-kit negative as doctors are withholding her results?Could this confusion be attributed to the fact that you have dealt with different 8 doctors and they had given you contradicting information?
There are two red lamps blinking in my head here that make me think this possibly could be cutaneous melanoma with unknown primary:the location/ spine/-for mucosal melanoma you need mucosal/wet/ tissue where it develops on and having spread without mucosal primary identified/present is highly unlikely, and the fact your mentioned twice your mom was a sun-worshipper back in her days.
No matter of the type of melanoma-cutaneous, acral, mucosal or uveal/ocular/-not all melanomas have permutations.Many have none at all.Mine is mucosal and right now they are testing my slides and I just have the feeling that as rare as it is,it will not have any specific gene mutations either/just gut feeling/.Also only 60% of the cutaneous melanomas have the BRAF mutation.The rest have no permutations.
So I need further testing is needed in your mom's case and see a specialist. Dr.Hodi from Dana Farber took special interest in mucosal melanoma so contact them ASAP.
Good Luck,
Teodora
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- August 13, 2011 at 1:12 pm
Ashley,
On a second reading I am somewhat confused.You mentioned your mom's melanoma is C-kit positive therefore doctors are assuming is either mucosal or acral.Then you mention she might be C-kit negative as doctors are withholding her results?Could this confusion be attributed to the fact that you have dealt with different 8 doctors and they had given you contradicting information?
There are two red lamps blinking in my head here that make me think this possibly could be cutaneous melanoma with unknown primary:the location/ spine/-for mucosal melanoma you need mucosal/wet/ tissue where it develops on and having spread without mucosal primary identified/present is highly unlikely, and the fact your mentioned twice your mom was a sun-worshipper back in her days.
No matter of the type of melanoma-cutaneous, acral, mucosal or uveal/ocular/-not all melanomas have permutations.Many have none at all.Mine is mucosal and right now they are testing my slides and I just have the feeling that as rare as it is,it will not have any specific gene mutations either/just gut feeling/.Also only 60% of the cutaneous melanomas have the BRAF mutation.The rest have no permutations.
So I need further testing is needed in your mom's case and see a specialist. Dr.Hodi from Dana Farber took special interest in mucosal melanoma so contact them ASAP.
Good Luck,
Teodora
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- August 13, 2011 at 2:08 pm
Ashley, I am sorry to read that your mum seems to be running out of options.
Unfortunately, melanoma can be fairly resistant to radiation treatment. However, it is good
that the CT scan didn't show any more areas that could be melanoma.Melanoma with an unknown primary is treated the same way as if the primary is known
(once the initial lesion has been removed). However, it would be important to know the
details of any pathology report (of a biopsy that has been done) as it is unclear as to
what type of melanoma we are dealing with.As Yervoy has recently been approved by the TGA in Australia, I think that could be well
worth considering as your mum's next step. It is the best drug that we have at the
moment, so hopefully the oncologist will know how your mum can get access to it.However, I feel that TIL treatment (adoptive cell therapy) is the most promising therapy
that is available. As far as I know, it is not yet available locally.The difficult thing with some clinical trials is knowing who to contact, as the
researchers are often too busy to reply.I encourage you to keep in touch with us in this forum. There are some very
knowledgeable people here who are really up to date with the latest treatment
information.Hope this helps.
Frank from Australia
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- August 13, 2011 at 2:08 pm
Ashley, I am sorry to read that your mum seems to be running out of options.
Unfortunately, melanoma can be fairly resistant to radiation treatment. However, it is good
that the CT scan didn't show any more areas that could be melanoma.Melanoma with an unknown primary is treated the same way as if the primary is known
(once the initial lesion has been removed). However, it would be important to know the
details of any pathology report (of a biopsy that has been done) as it is unclear as to
what type of melanoma we are dealing with.As Yervoy has recently been approved by the TGA in Australia, I think that could be well
worth considering as your mum's next step. It is the best drug that we have at the
moment, so hopefully the oncologist will know how your mum can get access to it.However, I feel that TIL treatment (adoptive cell therapy) is the most promising therapy
that is available. As far as I know, it is not yet available locally.The difficult thing with some clinical trials is knowing who to contact, as the
researchers are often too busy to reply.I encourage you to keep in touch with us in this forum. There are some very
knowledgeable people here who are really up to date with the latest treatment
information.Hope this helps.
Frank from Australia
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- August 13, 2011 at 2:44 pm
Hi Ashley, If you want to e-mail me at [email protected], I can give you a contact # for NIH..they can probably tell you if any of their trials are suitable for your mom. That's if it's possible for your mom to travel to the U.S. I leave Tuesday to go back to NIH for TIL trial. Val
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- August 13, 2011 at 2:44 pm
Hi Ashley, If you want to e-mail me at [email protected], I can give you a contact # for NIH..they can probably tell you if any of their trials are suitable for your mom. That's if it's possible for your mom to travel to the U.S. I leave Tuesday to go back to NIH for TIL trial. Val
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- August 14, 2011 at 11:30 pm
Hi all,
Thank you so much for your responses.
So sorry for the confusion about c-kit – I was a little confused at first myself. What happened was that Mum's original biopsy swabbed for c-kit staining. However, now we have actually sent the biopsy for the definitive c-kit test…and we think that it is going to be negative which is odd.
I will definitely try to get in touch with Dr Hodi per the address you have provided – I have tried to get in touch with him as well as my Dad without success – however this now makes sense why!
Mum is off to the oncologist tomrorow so it will be interesting to see what he says. Dad and I are armed with our next lot of questions and options. We have also been aware of the successful (well, 3 patients…) treatment of leukemia patients with gene therapy, and I have put an email off to them t o see if they'd be interesting in using Mum as a test for other cancers and the gene therapy.
Thanks again for your help…I will let you all know how the oncologist goes tomorrow.
Cheers,
Ashley
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- August 14, 2011 at 11:30 pm
Hi all,
Thank you so much for your responses.
So sorry for the confusion about c-kit – I was a little confused at first myself. What happened was that Mum's original biopsy swabbed for c-kit staining. However, now we have actually sent the biopsy for the definitive c-kit test…and we think that it is going to be negative which is odd.
I will definitely try to get in touch with Dr Hodi per the address you have provided – I have tried to get in touch with him as well as my Dad without success – however this now makes sense why!
Mum is off to the oncologist tomrorow so it will be interesting to see what he says. Dad and I are armed with our next lot of questions and options. We have also been aware of the successful (well, 3 patients…) treatment of leukemia patients with gene therapy, and I have put an email off to them t o see if they'd be interesting in using Mum as a test for other cancers and the gene therapy.
Thanks again for your help…I will let you all know how the oncologist goes tomorrow.
Cheers,
Ashley
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