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February 3, 2013 at 6:00 pm #20988
Hi again… As most of you know, Amy started the BRAF/MEK trial about 5 days ago. Prior to starting the trial, we thought she had a small hernia cause there is a small lump in her abdomen. Her VA oncologist said it is a subcutaneous tumor but there were other things more pressing to discuss and I never did get much of an explanation of what this means or what a subcutaneous tumor really is.
This morning Amy said she “feels bruised and I have a knot” on the underside of her forearm (below bicep). I looked and there is no bruise but there are two “lumps”. They are tender. I’m assuming these are more subcutaneous tumors.
Can anyone help me understand what exactly are subcutaneous tumors, and what they often indicate? Is this a metastasis? Is it something to be really concerned about? I’m just a bit in the dark. We will of course bring it up to Dr. Ribas next week when we go to UCLA, but I’m just wanting some preliminary understanding.
SylviaFebruary 3, 2013 at 10:36 pm #58949
Absolutely bring it up with Dr. Ribas. They could be subcutaneous tumors, just another way for melanoma to spread that sometimes can be surgically removed. Or it could be something else. You may want to notify him ahead of your appt. in case there is a procedure to set up. I would talk to the study nurse about it tomorrow and get her take on it.February 4, 2013 at 5:28 am #58950 This is a very pertinent question from our house too. Last week my husband’s PET scan showed several subcutaneous tumors (two on his chest, one on his back and several on his legs). I could feel the lumps on the chest and the back but can’t detect the ones on his legs.
As Catherine said, the oncologist told us they were a way of melanoma spreading. My question is: if they aren’t removed and IPI doesn’t shrink them, will they get bigger and become painful? So far, my husband has no pain from them.
He was on Zelboraf until a week ago last Friday when his PET showed that the melanoma progressed after five months and started IPI on this past Monday. Until this scan, he has never had a subcutaneous melanoma — other lesions and lymph nodes but not these guys.
Thanks for any light you can shed.
AnnFebruary 4, 2013 at 8:01 pm #58951
Catherine & Ann – Thank you for the response. I have emailed Dr. Ribas about them and he has already replied asking us to show them to him this Wed. @ UCLA. The strange thing is that nothing showed up on the PET scan she had last week at UCLA. Plus, brain MRI two weeks ago indicated a “22mm mass” in her right sinus cavity but PET scan showed nothing there either. I don’t get it. But, hopefully we’ll start understand what is going on soon.
Ann, I’m sorry the Zelboraf stopped working and hope you have good success on IPI. It works so well for many.
I’ll get back with what Dr. Ribas says after the appt. Wed.
SylviaFebruary 5, 2013 at 3:06 pm #58952LoveJunkyParticipant
Subcutaneous just means under the skin. Also PET scans work by injecting radioactive sugar into the body. Tumors grow through an anaerobic process like fermentation as opposed to normal cell growth which is an oxidative process. As a result tumors use sugar as their main source of energy for this process. The PET scan looks for the places in the body that are absorbing a high amount of sugar. The sinus MET not showing up is most likely because it wasn’t growing at the time of the scan. PET scans are used mostly for staging and seeing how far it has spread throughout the body.
Good luck with the trial, I’m on a braf/mek and in only a couple of days my tumors were noticeably smaller and still shrinking.February 5, 2013 at 6:30 pm #58953
Thanks LoveJunky! Here are my two questions:
If they grow, or even if they don’t, do they cause pain? Also wonder if they ever grow up through the skin?
Any help from those who have lived with them would be appreciated!!
AnnFebruary 5, 2013 at 9:20 pm #58954
Thanks for the response. To be more precise, I know what a subcutaneous tumor
is , I just don’t know what it means . I know if melanoma goes to a node or organ or bone it’s obviously not good and something to be alarmed about. If one has a subcutaneous tumor, I know it’s not good, but how alarmed should one be and what does it often indicate?
SylviaFebruary 5, 2013 at 10:51 pm #58955
I believe this is just another way for melanoma to spread. Some of these are easy to surgically remove and don’t cause any further problem. Others can be painful and difficult to manage. If they are far away from the original site, then it could indicate a seeding of tumor cells along the way. There is a topical treatment out for them that is being tried when surgery isn’t an option. It is an odd thing that is “special” to melanoma!February 6, 2013 at 2:51 am #58956dkmcParticipant Hi Sylvia,
Don had a SQ tumor on his back(biopsied & positive for melanoma) when he went stage 4(also mets to lung) but we decided to wait to see if ipi worked & not surgically remove it right away. Very nerve racking to wait but in his case ipi worked & both were totally gone after 5 months. IF it had not I think he would have had that melanoma tumor removed. Because that is what it was, another tumor.
I remember patients I have taken care of who had SQ tumors removed multiple times. I remember them telling me how difficult it was to keep facing another surgery…who knew melanoma would come calling so personally to my family.
Hopefully Amy’s will respond to the new treatment. Take care, KarenFebruary 6, 2013 at 3:08 am #58957
Thank you Karen & Catherine,
Very helpful. And, I’m sure I’ll know more after our meeting with Dr. Ribas tomorrow. I’ll let you know what I hear.
SylviaFebruary 6, 2013 at 5:26 am #58958
Thanks for the info, Karen and Catherine and thanks to Sylvia for bringing up the topic.
I got my questions answered. My husband has several subcutaneous tumors at the moment and his wounds from Januray removal of 10 squamous cell and/or basal cell cancers (squamous were the result of Zelboraf) are still healing so the prospect of removal is not an attractive one at the moment. Hopefully, the IPI will reduce them like it did for Don.
Sylvia, hope things go well for you and Amy tomorrow! Will be thinking of you…
AnnFebruary 7, 2013 at 5:14 am #58959
Great news today from Dr. Ribas! The lumps under her bicep (and one came up on opposite arm on same spot last night) is a not so common side effect from the MEK portion of the BRAF/MEK combo. Don’t remember the long name, but it’s an inflammation of the fatty cells/tissue. Not melanoma! Said her symptoms of “feverish” feeling, fatigue, lack of appetite and nausea are all side effects and he prescribed the lowest dose of prednisone for all the symptoms including her inflammation. She has cut back almost 75% on her morphine and has stopped gabapentin and naproxene completely so obviously spinal tumors are receding. Next PET scan next week. She is also walking a bit better and Ribas said for her to keep exercising as he is hopeful I think for her to regain some function. We never know with this disease, but I’ll take good news when it comes and we are relieved and fired up.
SylviaFebruary 7, 2013 at 5:24 am #58960
What good news for you and Amy! Sincerely hope the prednisone can cause the undesirable side effects to subside enough to relax a bit. It is such a relief when you find out you’ve made it through another bad time and makes you so appreciate life when it can be lived semi- normally (not that I think using a walker and being sick to your stomach is living even semi-normally!) We take what we can get!
You know I have never enjoyed roller coaster rides in a theme park and after living through some of this melanoma stuff, I am pretty sure I will NEVER go on one again.
Hoping for great scans for Amy next week!
AnnFebruary 7, 2013 at 3:43 pm #58961buffcodyParticipant
I wonder if the one tumor that I am dealing with now would be classified as subcutaneous. It is not on an organ. It is not on a bone. It is located within my left buttock. Pretty deep I guess. I don’t know how deep. My oncologist’s fellow when I asked if this wasn’t an unusual place for melanoma to emerge answered that nowhere on or in the body is unusual for sneaky melanoma. My “second opinion” doctor said that he had his doubts it was melanoma, though he did not say that was because it was an unusual location. So, would you call it subcutaneous?? Has anyone had a similar leision?
FrankFebruary 7, 2013 at 4:02 pm #58962
I’ve known patients to have subcutaneous tumors in their buttocks, so it could be. Seems to mean someone should give you a definitive answer on that Frank. Maybe a biopsy? Or a scan?
Such good news from Sylvia! I hope it continues and I agree about the rollercoaster rider, I’m right there with you!
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