Terri

Hi, Terri. Some of us WN oldtimers are writing to others who haven’t been on WN recently, to find out how they are. We’d love to hear how you’re doing.

Hi Terri. I wanted to reach out to you about low thyroid function. I cannot specifically answer your questions as to how having the thyroid removed would affect you, or anything else dealing with thyroid cancer. However, as I said before, I have lifetime hypothyroidism.
You mentioned feeling "crazy." As I said, hyper-emotions can be a big sign that your levels are off. I find myself a lot moodier than usual and a lot more emotional.
My other big sign is usually hypersensitivity to heat/cold. Just getting ice out of the freezer to put in a drink can be really painful for me if my levels are too low. Our local water company was recently doing maintenance on their pipes and the water is usually hotter than usual when they do it. I could barely turn my water on because it was scalding hot (or felt that way to me).
Recently I started losing hair. I feel certain it is not related to my cancer (I am ER+/PR+/HER2- breast cancer- DCIS). I have been on Anastrazole for almost 9 months and this hair loss just started. I mean, maybe the meds are affecting my thyroid levels but it's not like "chemo hair loss." Just more coming out in my brush than usual.
Really dry elbows, knees (like sandpaper).
I am supposed to go in to have my levels checked later this week.
Best of luck to you.

You might volunteer to help

Terri I just have had a thought about something you might do. Are there any shelters for the fire victims in Thousand Oaks (I have read that it came very near to there) Is any organisation having a Christmas Dinner for them?

I noticed that you live in Thousand Oaks. Were you hurt by the fire. I am still praying for California

Hi Terri, just saw your wall post to Mark and wanted to touch base as I was diagnosed Stage IV melanoma in January and then scan and CT biopsy showed tumor now on my liver. On Keytruda but liver tumor has still grown larger. Just had a CT-placed fiducial (gold) beads) placed and now scheduled for CT confirmation of placement to then to start 6 every other days of focused radiation in hopes of destroying the tumor, while still taking every three week (Tuesday) session of Keytruda infusion. . And, on top I thin kl I am now exhibiting side effects from Keytruda as my finger joints, arm and shoulder muscles are sore and tight...as if I pulled muscles after hard labor. Trying to keep it all together and keep the faith at same time. Any thoughts, experience advice beyond that expressed to Mark appreciated in seeing that you are a 9 year survivor and now becoming my hero. Also I gather even after 9 years you are still on some on-going therapy. Thank you. .

Hi Terri, just stopping by to see how you are doing. Sandi

Terri, I am Computer challenged and wondering how to post a self photo? lol!

Terri, I was just cruising around the site and saw some of your posts. Thank you for being such a valuable family member. Wishing you the best.

Hi Terri, Sounds like we have matching scars, only my big arm scar is on my right arm, above my wrist. It is very deep & an oval about 4" x 3''.
I had it done around 1965 as a young woman --- hey, I'm old as the hills!
Way back then, surgery was the only cure, no chemo or any other therapy was used. I was really cut up badly, skin grafts & lymph node removals.
I never had any other problems till about 6 years ago when cancer showed up again, this time several very rare sarcomas, some pre-cancers & a bunch of skin cancers. I won't go into all of them, as it is boring & long! Countless operations, you know the drill!
I seem to be ok now, but who knows the future.

So how are you coming along? Please let me know.

Thanks for your encouragement. I see you've had a very tough time, yet you are still supporting others on this site. You must be a very strong and caring person. I'm getting a lot of "I don't know what to say" from friends and family. Even though I have Stage IV melanoma too, I still don't know what to say to you after reading your story here. This is so scary, but somehow it helps to know that others are fighting it too. So thanks for sharing.

Glad to have you aboard.....I sometimes have strong opinions and also post a lot of info...Hope you are doing ok today.
Barry

Hi Terri- I hope you are having a wonderful and healthy day!! I wanted to ask you if you ever had a lymph node dissection? I know you have been through a lot and still a brave warrior!! I am new to all this and it freaks me out. I think I am numb and so confused since I am mixed on conventional med. and holistic.

Hi Terri, you had posted that you were having problems, what sort of problems, and how can I help?

Good morning Terri, I appreciate your positive attitude/outlook on life and your inspiration to others.

Hi,

See if they could put in a pic line instead of a port. It was well worth it.

Good Luck
Deb

Hi Terri, we have an opportunity for melanoma patients to participate in a survey/study about their treatments they have taken. It's a simple survey that will take about 90 minutes by phone, if you qualify to take the survey you will be paid $200.00. If you check your email you will find an invitation to take the survey to see if you will qualify. Let me know if you have any questions.
Greg

Teri, Do these recent posts mean you are actively going through medical madness again, or are they updates about your treatment historically? In either case, I wish you many calm and joyous days.
Constance Emerson Crooker

Welcome. Thank you for taking the time to register and share your journey. I know we have several people on the network with Skin Cancer experience so when you are ready please do not hesitate to reach out to them. They are here for the same reasons you are.

If you need anything (e.g., emotional support, help finding support/care resources, insights), you can post in our Questions section. You can do this by clicking on the "Ask Network" link on your logged in home page or the "Questions" link at the top of this page. When you post needs/questions using our question feature, we route your question to everyone in the network who might be able to help. Also, know you can use the "Update" feature on the site to keep anyone who might be following you on WhatNext up to date.

I look forward to reading about your progress.
- David, Founder, WhatNext

Terri,
I read that you had hallucinations and almost died from low blood pressure, so I guessed that you had been treated with the hideous interleukin-2. Then I saw in another post of yours that I was correct. I too had the same dubious privilege, and I ended up in the ICU from crashed blood pressure. I saw bugs crawling on the walls. I was so agitated, I took a nose dive off my bed and they had to restrain me. I puffed up like the Pillsbury Dough Boy and my skin itched intolerably for weeks. Then, after all that torture, my inoperable tumor was still growing! Then they radiated it, and it started shriveling up. They told me it was the combo of radiation and IL-2 that turned the tide. That was five years ago. I've since had ipilimumab (few side effects) and two brain surgeries plus one targeted gamma knife brain radiation. There were two other surgeries in there somewhere. Yikes, what a nasty disease we have. But I am now living scan to scan with no active cancer showing, so I'm glad for the reprieve. I do my best to keep doing things I enjoy, and I also spend lots of time with other cancer patients. I just came back from lunch in a Chinese restaurant with a friend who is on hospice. I treasure precious time with other late stage cancer patients.
I wrote about how I enjoyed a cross-country, solo tent camping trip after my initial round of treatments in my book, Melanoma Mama: On Life, Death, and Tent Camping. I also go into grim detail there about the IL-2. You can read the first two chapters for free on my website at www.melanomamama.com, or on Amazon.
I hope you can keep picking roses from the dung heaps of medical madness.
Constance Emerson Crooker

What kind of adjuvant therapy are you going through now? Looks like despite all the horrors of your journey with your initial therapy, something must have worked and worked very well if you are around to tell your tale four years later. Was it the Yervoy? I had a course of that starting back in last October and only had one tumor pop up, a sub-q in my left buttock, since then. Diagnosed with Stage IV w/o knowing I had any previous stages, unknown primary still. Doing any of the BRAF therapy? I am wild type so no nelp for me there. So far just SRS on two brain tumors, Yervoy, and surgery on butt and lobectomy. Not too tough.