› Forums › General Melanoma Community › Celeste Et al
- This topic has 6 replies, 4 voices, and was last updated 4 years, 9 months ago by
Maureen038.
- Post
-
- July 6, 2019 at 3:18 am
I’ve been having some rashes below the elbows and knees. Not real severe but persistent. Dermatologist did a punch biopsy which raised the concern for a connective tissue disorder such as lupus. Blood work was ordered and I just got the results. Probably won’t talk to Derm until next week. From what I’ve been able to determine the Homogeneous Pattern and Speckled pattern don’t seem too bad but it still says “positive” under Antinuclear Antibodies. Can anyone give any insight as to the meaning of this report. Thanks in advance.Antinuclear Antibodies, IFA
Homogeneous Pattern
1:160Speckled Pattern
1:160Antinuclear Antibodies, IFA
Positive
Negative <1:80 Borderline 1:80 Positive >1:80
- Replies
-
-
- July 6, 2019 at 2:30 pm
I would say that the report of your blood work noted here is rather ambivalent., not conclusive of much of anything. Have you attained the biopsy results yet? Hopefully the path report will provide clearer answers. The pattern of the rash you describe seems atypical. Sorry you are dealing with it. What does it look like? Rough? Smooth? Itchy? Painful? Melanoma sucks and melanoma treatment sucks. Immune reactions that help us in regard to melanoma can certainly hurt or bug us in myriad ways!! So ~ things can be very difficult to parse. To add to the complexity, even the maintenance scans we endure are not without consideration when we develop “strange” issues. The gadolinium used in MRI’s can be deposited in our skin, causing odd rashes and effects. I am not saying this is what is causing your problems, but it is a “thing”. Here is one report: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4879157/Mostly, I think the pathology from the biopsy will be more informative than this report from your blood work as it is quite inconclusive. Hang in there and keep us posted! Love to you and yours! c
-
- July 6, 2019 at 11:14 pm
Sometimes treatments cause weird skin issues. Sometime the weird skin issues may even indicate a possibility the treatments are working. So hopefully you have gotten your report and have had a discussion with the dermatologist an hopefully the pathologist and dermatologist know about us melanoma patients.
I have a few weird skin issues, so I know how, annoying and scary this is.
I have had 3 abdominal surgeries for metastatic melanoma (24 years after my initial skin melanoma), 4 cycles of IL2, 4 Yervoy infusions, can’t not remember how many Opdivo infusions and had disease progression. I am grateful that I the BRAF mutation and have been on Tafinlar and Mekinist for two years AND have been NED for the past year and a half, and a number of skin issues.
Best to all of us. -
- July 7, 2019 at 10:19 pm
Thanks EllieS,
I had my last treatment from Dec 2016 to Mar 2017. That consisted of a adoptive cell therapy along with 4 infusions of Yervoy. A couple years before that I did a Ipi/nivo trial for a couple years. I’m not sure these rashes are related to my past treatments but I wouldn’t be surprised at all if they were. Glad you have found success with Taf/Mek! Best wishes. -
- July 7, 2019 at 10:10 pm
Thanks Celeste,
The comment section of the biopsy report reads, “Both biopsies demonstrate a similar range of findings, however the lichenoid change is less prominent in the second biopsy. There is some dermal mucin noted in both biopsies which raises the possibility of connective tissue disease (lupus or dermatomyositis). In the absence of other supporting factors (ie serology, etc) the findings can support a diagnosis of erythema multiforme/Steven-Johnson syndrome. Another consideration is lichenoid drug eruption. Clinicopathologic correlation is recommended.”The rashes are diverse. Some are bumpy and very itchy and some are just red circular splotches. I had a similar episode last year about the same time. The difference between then and now is last year it was only on my lower legs and went away after a couple weeks. This one has been around at least a month and just when I think it’s resolving it will flare back up. I’ve reached out to the supporting cast at MDA to see if they have any thoughts. I suspect there is going to be a slew of more blood work done and probably even another biopsy or two. I may even need to go to a place with more experience with “Ratties” like you and I. Around my parts the medical folks really don’t quite understand what I’ve gone through.
That link to the MRI impacts is interesting. I have always been one to chug the water after those scans. It did mention something about adverse events happening within the month following the MRI. Don’t think that applies in my case but I’m going to be tracking that more in the future.
-
- July 8, 2019 at 12:15 am
Well, ain’t that great! HA! The biopsy report is inconclusive too!! Oh, well….perhaps your docs that were involved in your prior treatments may be more helpful. Given your description of the rash (as well as the time frame) I don’t think it sounds related to the gadolinium either. Besides, as I understand it, lesions due to that would involve more fibrosis than it seems you are describing. Just wanted you to be aware of the data in case it was important. Given the itching and your reports, it does sound more related to a drug reaction. I know that seems crazy as well, given the treatments you have had were not completed yesterday. I had tons of rashes throughout my trial and they carried on for more than a year afterwards…flaring and fading. Toward the end of my years on nivo, I began to develop what probably were “fixed drug reactions” that would erupt during the infusion, in addition to all the other rashes I had ongoing. An email friend of mine just finished what was probably ipi/nivo for a year in a Stage III trial. He developed red blotches on his face as his infusions continued. Sometimes itchy, sometimes not. He is off the treatment, but the rash persists, though granted in his case it has only been a couple of months. Using the word “fixed” just means that the rash keeps recurring in the same place, rather than over the entire body. So in the patient I’m describing – his rash would appear on his cheek, go away, only to return in the exact same place – and now – off therapy – it is persisting. That seems much like what you are dealing with as well – albeit different location and over a much more extended history. I think there is a great deal that researchers do not understand (OBVIOUSLY!!! HA!) about how immunotherapy works and all the things it works on – whether we want it to or not. I think dendrites in our skin are very much affected and are certainly playing a role in all of this. But….what do I know???? Anyhow, sorry you are having to deal with it. Keep us posted on what you find out. c -
- July 16, 2019 at 10:15 am
I’m sorry Brian that you are dealing with annoying drug reactions. Please let us when you find out further information. Take care .
Maureen
-
- You must be logged in to reply to this topic.