Granuloma Annulare and MBC: So, today... - SHARE Metastatic ...

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Granuloma Annulare and MBC

72 Replies

So, today after seeing 5 doctors, 2 nurses and an Oncologist over the course of a year I have been diagnosed with Granuloma Annulare. A nasty looking rash/blotches around my ankles. Nobody knew what it was and yesterday it was irritating so much and I was losing so much sleep I phoned my GP. I was told I have to wait 3 weeks for an appointment but I could see a Senior Nurse at the surgery. Of course I agreed. She recognised straight away. Her daughter had the complaint whilst studying to be a nurse. It’s caused by stress. What are the chances of that happening. She had first hand knowledge of it and showed me all the pictures on the internet to confirm this is what I had. I just couldn’t believe my luck, seeing this nurse at this time. So, it will disappear in time, hopefully but at least I know why I have this skin problem around my feet and ankles. It’s not contagious neither is it anything sinister. Now I can take a deep breath and just try and forget it. Antihistamine helps the irritation that keeps me awake of a night. Any one else ever had this?

I hope you have had a good day 🙏🏼🤔💗

72 Replies
MaryCos profile image
MaryCos

I have never heard of this, but I am glad you figured it out and that stress is the culprit. Now the question is what you are going to do about the stress!

Thinking of you!

❤️

Nocillo profile image
Nocillo in reply to MaryCos

Find a job yet?

MaryCos profile image
MaryCos in reply to Nocillo

Thanks so much for asking! I had a third interview for an international Executive Director job last week. Waiting to hear if I will advance. Sounds like they expect at least two more interviews before they make a decision. I think this is excessive, but I like them a lot. So, I will see where this leads. 😊 In the meantime, more resumes going out today... before and after getting my monthly labs and tumor marker test this morning.

mariootsi profile image
mariootsi in reply to MaryCos

Good luck! Hope you get the job!

MaryCos profile image
MaryCos in reply to mariootsi

Thanks so much! With the first two interviews, I felt like they were already sold on me. Third one... not quite as much. Not a bad interview, but it was more that "normal" interview with stupid questions rather than a give-and-take conversation. Trying not to second guess myself. Either it will fall my way or it won't. 🤞

blms profile image
blms in reply to MaryCos

Good Luck! So glad to hear that you have something promising.!1

MaryCos profile image
MaryCos in reply to blms

Thanks!

blms profile image
blms in reply to MaryCos

Hope you are well. My health has been interesting and challenging but I'm still here. My youngest is getting r ready to move next Monday to his first apartment out of law school. He will be close in NW DC, so for that I am grateful.

MaryCos profile image
MaryCos in reply to blms

I am doing well. Health is good, and I am only 2 months away from moving my care to Johns Hopkins. YAY! Sorry to hear that your health has been "interesting and challenging"... but... of course I am glad to hear that, not only are you still here... but that you have things in your life for which to be grateful. Happy to hear your son will be nearby. ❤️

blms profile image
blms in reply to MaryCos

After next week when I have the house to myself, I will try to remember to call you. My memory is struggling these days with the chemo so I am not getting as much done. I am so glad for you that Hopkins is finally in play. I hope you are happy there with your care. So far, Georgetown Lombardi has been great. Everyone is so very nice, in every department. I have not met a disgruntled employee to date! That is worth the weight in gold for me these days. I wish you the same!

MaryCos profile image
MaryCos in reply to blms

Thanks, sweetie.

Red1246 profile image
Red1246 in reply to MaryCos

Wishing you all the best. Look forward to hearing your news soon - hopefully on the markers too. 🙏🏻

MaryCos profile image
MaryCos in reply to Red1246

Thanks Red! Will keep you folks posted!

I got all my labs back already EXCEPT the markers. I think they do this on purpose, making us wait an extra day or so just to torture us! I probably won't know the answer to this one until tomorrow. But my recent scans were really good, so I feel less anxious than usual.

Red1246 profile image
Red1246 in reply to MaryCos

Excellent news on the scans, Mary!Yes, my markers come in a day later as well. 😒While I love it when they’re low (within acceptable range), I do know they aren’t 100% reliable and even if high, it doesn’t necessarily mean I’m riddled with cancer. Some doctors don’t even share marker info as it’s a source of stress and not totally reliable.

All best,

Kathleen

MaryCos profile image
MaryCos in reply to Red1246

Right, Kathleen! I am lucky that my markers are pretty low anyway. (I sometimes feel bad in worrying, and expressing worry here, because of that!) I was stressing a little more so in that I have been feeling sluggish/off over the last few days, which worried me as lab day approached. Then again, I am about to switch my treatment to Johns Hopkins... and I met my goal of getting 'here' in one piece after shitty care over the last (and my first year)... and I was more worried about a delay in restarting my Ibrance on time since I will switch insurance/providers on Nov 1st. Even a week delay could mean I would miss some time in this transition. So, as I am about to head to bed, at LEAST I know that I am fine on all my other labs and am where I need to be with neutrophils/platelets to continue on. More broadly, my tumor markers hover between 38 and 44. And, just last night... I instructed my body that I expect a 32. (I am an overachiever! 😜)

Cos

xo

MaryCos profile image
MaryCos in reply to MaryCos

Markers just came in. 43. I can live with that. Has been higher 3 times before. And this is my normal "range."

Red1246 profile image
Red1246 in reply to MaryCos

Hadn’t seen this when I last wrote. Glad the markers are within your normal range albeit not as low as you’d like. 🎈🎈🎈

MaryCos profile image
MaryCos in reply to Red1246

I was being hopeful/optimistic (and admittedly, PROBABLY unrealistic) that they would be the number I kept saying to myself over and over last night. Mind thing. 43 is not bad. Highest has been like 44.3. This is my norm. Now that we have my baseline. I also tell my cancer throughout my body that it is not welcome here. And, despite being mean, I tell it that it is ugly and no one loves it.

Titaniam_Turtle profile image
Titaniam_Turtle in reply to MaryCos

I love that. I am going to start telling it it's ugly and nobody wants it here! My tumor markets didn't even indicate a tumor twice, when I had tumors.😜Andrea

Red1246 profile image
Red1246 in reply to MaryCos

Excellent news, Mary! And to be cared for by JH: how fortunate.

Out of curiosity, what parameters are used by your lab for these markers? In my previous hospital they used 0-25 as normal; current uses 0-39. 🤷🏻A bit confusing.

Btw: I’ve gone off Ibrance (100mg) twice since I started two years ago; once for several months during the worst part of Covid last year and again earlier this year so I could have the 2 vaccines when wbcs high enough. My scans during these periods came back “stable”. So I think one can play around a bit with it and still reap the rewards.

Hope you get that 32!

❤️Kathleen

MaryCos profile image
MaryCos in reply to Red1246

Normal "here" is <=31.3 U/mL. When I said I was shooting for 32... I never expected that. But, I also told my breast tumors to go away and they almost all did. So, I keep up with the self-talk. By the way, my current oncologist doesn't think I can get to NED/NEAD... but I pushed to get a PET scan this last go around, and... why not? First time in 9 months that they could tell me what I really wanted to know. What still lights up? (Oh and my new GYN did a breast exam and couldn't detect any tumor or masses. I showed her a photo of what my utterly deformed breast looked like when I STARTED treatment, and her jaw dropped to the floor.)

My (second) oncologist said that the best I can hope for... so HER goal... was no progression (i.e., stable). I have been stable. But I also told her that MY goal is to know what is no longer there. I win. (And, I can't wait to get to Hopkins to see what they have to say about my care at Kaiser Permanente over the last year. "Care" is a generous word here.)

Red1246 profile image
Red1246 in reply to MaryCos

Oh no - I’m so sorry to hear you’ve been with Kaiser and your treatment had been sub par. I am as well - in California.

My Onc is head of the department and I therefore have little time with her but she’s very academic and does a lot of research so I like that.

The NP with whom I work has been a North Star as I’ve been navigating this unfamiliar territory. Sadly, given family and managing the stress of 35 patients, she is now on leave dealing with breast cancer herself.

There is no doubt in my mind that stress is an important factor in cancer. I had just finished fundraising a large amount of $ in my job as Dev. Dir. of an international NPO when I was diagnosed.

I like your self talk. I’m also sure positivity is important in dealing with our dis ease.

Wishing you all the best, Mary. 🙏🏻

MaryCos profile image
MaryCos in reply to Red1246

I just followed you. Appears we have many things to talk about, if you are game, as we have a lot in common. The non-profit field, for starters.

I am a Social Worker and I spent the first half of my career as an administrator and state disability advocate. First time I ever had to advocate for myself, non-stop... or even at all (at this level). I think my non-existent medical "team" at Kaiser will be glad when I am gone, cause I actually demand the care I need. How dare I.

Frankly, if I didn't find this forum and start researching MBC, I would have... ABSOLUTELY... had a shorter lifespan that what I may now have. Will fill you in more if we talk privately! Had a long day, and I have to go to bed!

Red1246 profile image
Red1246 in reply to MaryCos

Yes! I’d love to connect. How do we do that privately? K

MaryCos profile image
MaryCos in reply to Red1246

Will start us off with sending you a message. If you reply tonight, you won't hear back from me until tomorrow... but we can get the ball rolling. xo

Red1246 profile image
Red1246 in reply to MaryCos

Great. Hope you received my replies (2) including email address. Xo

MaryCos profile image
MaryCos in reply to Red1246

I only got one reply, and I just responded to you. Gotta get some resumes out the door and then I will write more to you! xo

in reply to MaryCos

My vegetable plot, music and the thought of going to the Lake District next month and our booked cruise for the Norwegian Fjords next May. All helps to reduce my stress. Guess that sums it up really. Hope you are sorted out now. Xxx

Blimey Cheryl that was fate. Thank goodness for Nurses. So glad you don’t have to worry about the rash now, other than it irritating of course!Beautiful flowers and arrangement. So simple yet striking.

Hope the treatment is going well?

Clare x

in reply to

It’s so ugly to the point of embarrassment Clare. In this hot weather it’s hard to cover it up with leggings or jeans. I’ve got to chill, lose myself at the allotment and look forward to our trip to the Lakes. When is goes down in places it leaves the skin pink like it’s newly grown skin. Odd thing.Talk soon, Cheryl

in reply to

I suppose it’s too hot for some funky leg warmers?!! Seriously though, don’t sweat it, just be free and flowing. Nobody will stare, they are all too busy thinking about how they look themselves. When are you off to the Lakes?

Clare x

in reply to

That’s true Clare. Especially in Liverpool. Friday night rollers in their hair and Primark carriers. Bee sting lips as hubby calls them. Have to laugh. Off on 8th October just before my birthday. Can’t wait. It’s so beautiful there in Autumn. Been to the dental hospital again today. Got more antibiotics. Had more X-rays and so it goes on. Bloody teeth. Drive me nuts. Still, we have great weather and I feel ok so happy lady today. Hope you are ok. Sending hugs xxx🥰

in reply to

😂 love a young Liverpudlian. I won’t tell you what we call those lips on here, it’s too rude. Happy sunny days make these hospital and dentist visits manageable. I will PM youClare xx

Bettybuckets profile image
Bettybuckets

Lucky dip as they say in NZ!

in reply to Bettybuckets

S**t lucky is what we say……😉🥰

483724667 profile image
483724667

sorry to hear about your nasty rash...have a similar problem but it's my arms ...find Aloe Vera helps...mine is not as bad as yours....l wish you well...and a question how do we stop stress ? really like to know sure we all would ...l love your flowers...well god bless and take care..Maggie x

in reply to 483724667

Hi Maggie, Google it. You can have it anywhere on the body. I’m taking antihistamine to help with the itching of a night. That’s when it’s worse. As for stress control, who knows, so many suggestions and ideas. Think it runs in my family. I care so much about others more than myself. That’s got to stop. Sending best wishes and hope your arms get better. Cheryl

Ardie1970 profile image
Ardie1970

I don’t think it is possible to remove stress completely...especially in our situation. I have found that yoga, walks in nature with the dog, meals with my family eating all our favorites, and acupuncture really help me with mine.My functional doc thinks stress is the #1 culprit in why everyone it seems is getting cancer.

Nocillo profile image
Nocillo in reply to Ardie1970

I think stress plays a huge part. I was massively stressed in the years preceding my diagnosis.

mariootsi profile image
mariootsi in reply to Nocillo

Me too!

in reply to Ardie1970

That seems great and I’m glad you are busy. To be honest we have high Covid numbers still in our area so we prefer to stay away from public places right now. We food shop, go to my Stepdaughters and tend our allotment. That’s enough for now until cases drop. A nightmare really. Our friend was double dosed and caught the variant from going to the gym. She’s fine now but was so poorly. She is diabetic so maybe her resistance was low. Take care x

Red1246 profile image
Red1246

Hi Cheryl,Was the rash raised and “wet”?

I had a really itchy rash around my feet about a year ago and no one could figure out why. I was given topical meds and antihistamines too. Sort of helped but still itchy and kept me wake most nights. One dermatologist swore it was a reaction/allergy to a mosquito bite but there weren’t any around then so I wasn’t convinced.

It went away eventually but came back a few months ago and I treated it with Witch Hazel and Tea Tree Oil. Amazingly this worked so that’s my new go-to if it ever comes back. I’m going to look up GA and see if there are photos posted.

Some of my meds can cause a rash and I think it’s maybe that in my case as I don’t feel I’m unduly stressed.

So glad you know what it is and that it’ll disappear at some point and isn’t serious.

All best to you!

Kathleen

in reply to Red1246

Hi Kathleen. It is raised at times but not wet. There’s also very smooth patches where the rash has disappeared slightly. Really weird. I tried every cream under the sun plus soaking in tea tree oil. None of it worked. Don’t suppose it would as the problem is purely stress related. Now I take an antihistamine at night to stop the itch and help me sleep. During the day it doesn’t itch so much. It will come and go according to our situation. I’ve gone through it these past couple of weeks (I know I’m not alone) and I think it made it worse. Please do look it up. It will help. Best wishes

Cheryl

8576 profile image
8576

Thanks for sharing the picture of the flowers. Very nice. Glad you have found an answer to your rash problem. Gives you some relief just knowing what it is.

Cheers, June S.

in reply to 8576

Hi June, thank you. I cut the flowers from the allotment. If there is one thing that cheers me up it’s my flowers. I always think positive but occasionally we need something else. They are Astrantia,Blue Lavender and small Sunflowers.Take care x

PJBinMI profile image
PJBinMI

My daughter had this when she was a kid and I don't remember if we found anything that helped. I wish I could tell you more about what we did. During my long walk with cancer, I have learned all kinds of weird things. One of the best is the website healthjourneys.com and its audio work by Belleruth Naperstek. She's a psychologist who has studied the mind body connection. I bought her "surgery" CD and had a great experience with it--I went from high blood pressure when checking in for procedures to having a low-normal bp. She's done CD's on anxiety, cancer and all kinds of things. They come in CD, iPod download and something else that I never heard of. The downloads are pretty inexpensive. That might help alot of us with the stress of this lousy rotten cancer! Next time I talk with my daughter, I'll ask her if she remembers the Granuloma Annulare. This is the first time I have had anybody mention it around me!

in reply to PJBinMI

Thank you so much for the info. I shall delve into this. Anything to help. I expect many folks have it or have had it and not realised what it is. I hope your daughter has recovered well now. Take care and again thank you.Cheryl

in reply to PJBinMI

Any news from your daughter regarding the rash. Mine is awful today.Many thanks

Cheryl

PJBinMI profile image
PJBinMI in reply to

My daughter doesn't remember having this! She was pretty young when she had it, probably four or five so it was 50 years ago, lol. I am pretty sure that the doctor who diagnosed it was a dermatologist. Wish I had more info for you! My itchy blotchy rash cleared up about amonth ago, just before an appt with my dermatologist and he said we didn't need to schedule another appt. A few days later, itchiness back! so crazy

Rhwright12 profile image
Rhwright12

I experienced this when I had Radiation for Brain lesions last November. (No stress there 😱)

in reply to Rhwright12

All this time I’ve gone not knowing. Your stress levels must have been through the roof. I hope it has cleared up for you. At least I realise now I’m not alone. Best wishes

Rhwright12 profile image
Rhwright12 in reply to

Everything has been clear since January…Next scans in September 😀

in reply to Rhwright12

That’s great news❤️🙏🏼

Missmaddie615 profile image
Missmaddie615

Thanks for sharing the lovely flowers! So happy to hear it’s nothing serious! The Good Lord was watching out over you -putting that nurse there, at that time when you saw her, what a blessing!

in reply to Missmaddie615

Yes, I agree. Best wishes x

Thatflowerlady profile image
Thatflowerlady

Beautiful flowers ! that nurse was meant to be there that day .

in reply to Thatflowerlady

She sure was. X

ChipCw profile image
ChipCw

I have itching around my feet and ankles ,mentioned it to nurse told me to take antihistamines

in reply to ChipCw

Antihistamine seems to work at a night thank goodness. That’s all I’m going to take for now. Glad you found a solution. Cheryl

hdhonda profile image
hdhonda

All I can say is the Flowerfairy has beautiful flowers. Hope everything is resolved soon. Blessings, Hannah

in reply to hdhonda

Thank you Hannah. Flowers are all home grown.Cheryl

mariootsi profile image
mariootsi

Sit back now and relax! So glad you finally found out what your rash is!

in reply to mariootsi

I will certainly try. I lose myself in my own thoughts when I’m tending our vegetables and flowers and listen to good music. Of course it helps most of the time but not always. Positive thoughts now x

Bless you Sandra. You are so thoughtful and kind. When the nurse showed me the pictures it was like looking at my own ankles and feet. Relieved to say the least. Hope you are ok. Best wishes. Cheryl

Timtam56 profile image
Timtam56 in reply to

And when I first went to the doc 12 years ago, he told me I had ringworm. Then a second opinion from a skin specialist told me the truth of it.

in reply to Timtam56

One of the doctors,I saw thought it was a possibility to. Why on earth can they be so wrong.

Timtam56 profile image
Timtam56

Flower fairies. I’m sorry to hear this.I have had this damn immune disease for about 12 years. I hate hate hate it. It’s all over my torso at present.

When it first started it was all over my legs and arms. Knowing that it can move from area to area on my body…

I thought I’d rather die that have it.

Then I was diagnosed with MBC. And after a few months of treatment it went away. Now it’s back. I dont’ feel like I’d rather die.

But I still hate it. And the worst thing for me is that I get hot flushes, and in summer when it’s hot and I and if I’m going out, I don’t want people to see the rashes, so I either have to cover up and be hotter, or don’t cover up and people stare at me.

It’s very uncomfortable, But I spend a lot of my energy trying to put it into perspective…. as in, “I can still walk”. Or “I should be thankful for what I have got” etc.

This mostly doesn’t help me.

Isn’t it the little things in life that mean a lot? I hope you get some relief.

in reply to Timtam56

I feel the same. It’s so embarrassing. Fortunately mine is just around my ankles and feet.It’s hot here at the moment but I have to ignore my legs and wear cool clothes. It just itches otherwise. I feel for you. Like you say, we have to be thankful we are still here to tell the tale. Best wishes.

Hi!Your post caught my eye as I was just diagnosed with granuloma annulare as well. I had a biopsy by my dermatologist to verify as mine looked more like skin nodules. I admit I was nervous that I had developed cutaneous mets. My rash is on the back of the neck, arms and legs. I was so relieved that it was a benign condition. While I know it goes away on its own, I was prescribed a steroid cream as well.

Thanks for posting!

in reply to

Thank you for letting me know. Sometimes you feel your the only one. Yes mine can look lumpy when it’s aggravated. It also itches when I go to bed so I take an antihistamine which also helps me sleep. This is probably once or twice a week. May I ask what actually started yours off.Thanks

Cheryl

in reply to

Mine actually started during my first cycle of Ibrance, Letrozole and monthly Xgeva injections. It actually never bothers me, except for popping up. For me, it takes a couple of months to go away. By then I have new bumps. I actually read that in older women (I’m 59) undergoing cancer treatment, it could be an immune response. I am currently on cycle 8 of same meds. I was also relieved to know another member had the same skin condition! I am in the US in Oneida NY.

Thanks,

Nancy

in reply to

Compared to me you are young. I am 71. Don’t feel it though. I noticed it comes and goes. I was so stressed when I changed medication I think it made my skin worse. Let’s hope we both get relief from it eventually. Best wishes from North UK xxxx

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