Calling all TNs

Shopgal2

eschindler I asked my ro about that trial and my treatment hospital was supposed partner with the company to offer it, but my ro said they were not able to do it. She said that you have to be out of treatment for awhile and it involved having your monthly blood draws sent to a lab in California. I kinda wish my hospital was able to do it.

Lilttleblue did your mo suggest metformin or did you know to ask. I am intrigued about it. Does anyone have any info on what the drug is supposed to do?

Cocker sending you warmth from the east coast of the states. Hope you are healing.

BanR congrats on 3 years. That's really great.

Allydp

BanR - so glad you were there to help that poor child. I had a similar experience in a grocery store once. My husband and I found a child, about 4-5 years old, calling for his mom and dad. No one seemed to take notice. So I stayed with the boy while my husband went to find a clerk. It took us all 20 minutes to find the parents half way across the store! The Dad was calling out the boy's name AS they both shopped! We were appalled. On a better note, a pre HUZZAH for your upcoming 3 years!!! Do check in so we can all celebrate with you!!! I'll be 2 years on the 18th myself.

Cocker - thank you so much. That means a great deal to me.

Regarding Metformin - My PCP agreed to prescribe it for recurrence, but it gave me horrible migraines. I really tried to tough it out. Taking the lowest dose and working up. But I couldn't do it. I still look at the big bottle I've got here and get bummed.

Curlyq1974

Guess who is going to see Vinnie Meyers!!! THIS GIRL!!! Whoop, whoop! I called for information and I will be going in December. I am SOOOOO excited!!! Finally getting me some "cherries!" LOL!!!!

Cocker_Spaniel

Great stuff Curly, hope you enjoy.

ALHusband

Here's a pretty cool report to launch the weekend with. Tomorrow is my awesome wife Kathy's three year "chemo-versary"!!!!!! So far all is well! Praise God! Woohoo! Have a great weekend everybody!

lgoldie

I had a .8 mm TN tumor, lumpectomy, no nodes, 4 AC/3 Taxol all dose dense and a heck of alot of radiation.  I am no longer the same person I was but some things are even better.  I admit I have had lots of scans because I am paranoid.  I was diagnosed the last week of 2013.   Here are the things I have worried about:  Liver (fine), lungs (asthma), nodes in neck (nope), melanoma on back of retina (nope, freckle). stomach (nope), colon (nope),   I could go on.  If the scans, ultrasounds etc. don't kill me, I might make it.   Also, I am old for TN...58 now.  My mammo doc found this little tiny thing and the Mayo could barely find it.  I would love to have someone to talk to so I don't have to freak out all the time.  Right now it's my tongue.  My mouth has never been the same since chemo.

LoveMyVizsla

Woo Hoo Kathy and Husband!! Go out and celebrate!

Goldie, all of us have been in your shoes, or are going through it now, like me. You can come here day or night and express your fears and we will understand. This is a great group

Cocker_Spaniel

Mike that is an awesome report. Three years for your Kathy. Hope you both celebrate in a big expensive way!! Wonderful news.

Shopgal2

ally congrats on the upcoming 2yr mark.

Alhusband wow 3 years.

Huzzahs all around for all

Curly hope your cherries are awesome

Goldie welcome and please hang out a bit.

Anyone just tired of the humid summer yet? I love the warmth but really could do without the sticky humid stuff. I am learning the hard way that newly curly chemo hair doesn't curl but frizzes thru my curly hair products. I look like Kramer from Seinfeld. Yikes

SA8PG

Hi Shopgal

I didn't know if you have ever tried the product Be Curly from Aveda? It helped me soooooo much with my curls esp in this Texas heat. Hope all is well.

Hugs.

SA8PG

Mike & Kathy. 3 yrs. such a blessing!!!! Congratulations and yes we hope to hear how you celebrated. So so happy for you both. Hugs

G

ALHusband

We are doing a "belated" celebration. Kath works in the hospital and actually had to work all weekend. 12 hour shifts each day so she's exhausted when she gets home. So we will be celebrating with an awesome dinner tonight!

adagio

cocker - I will be visiting New Zealand in November - just wondering which part you live in.

Cocker_Spaniel

Mike after all those hours your Kathy will need some tender loving care, which I'm sure you will give her. Make that celebration dinner awesome. What job do you have?

Adagio I live in Lake Taupo which is smack bang in the middle of the North Island. What part are you going to.

georgie61

Please forgive me for not posting lately. I was more of a regular when I was actively going through treatment, but I thought I was getting back to "normal". I thought the worst was behind me and I still logged on here, but as a lurker and to offer other women support in the form of my story of achieving a pcr. Who could have imagined!?

On July 13-15th I went to a breast cancer recovery retreat - called
Casting for Recovery. It was wonderful. I met some wonderful ladies,
learned a lot about how to fly fish, etc... and stayed with all of
these wonderful people in Coleville, CA about 90 mins from Reno Since
I was finishing up on Fri the 15th, we thought how much fun it would
be to get a little vacation cabin outside of Reno for a couple days.
So Fri we checked into a cabin at Donner Lake with our son and
his girlfriend. We boated, rode bikes, fixed meals, shopped at
Truckee, CA and my husband and I were starting to talk about how we were going
to have fun doing simple things like this, while I still keep an eye
on the cancer. Sunday , the kids checked out to get ready
for Work monday but DH and I had one more night, so we decided to
take our fun electric / hybrid bikes for a long ride We went all the
way around the lake, stopped at the Donner Museum and then thought
instead of cooking we would ride into Truckee. We did and stopped at
a restaurant ,had a beer, appetizers, etc... and hopped on
our bikes to get back long before it was dark. That is is the last
thing I remember before waking up in a hospital a couple days later.

Apparently I was only about 5-10 seconds ahead of DH all on bike
trail - and when he came around a corner he found me on the side,
crashed, bleeding from my head - outside of my helmet - my face,
etc... and unconscious. Thank God we were wearing our helmets!
Some people stopped including an off duty EMT , and called 911. They
life flighted me to Reno and took me to hospital. It's been over 3
weeks and it feels like I've lost track of a ton of time an memories.
My memory loss, is from before we even got on our bikes to return,
and most of the time in the hospital. I had surgery in my face to
repair broken bones in the eye area - the orbital bones like brow,
etc... I was a complete mess. If you've ever seen the movie as good
as it gets - when Greg Kinnear wakes up after getting miracle ant just quit the crap beat
out of him, my friend said that it reminded her of that when she
saw me. She immediately started bawling, etc...I still don't look too
great, but am definitely recognizable which I wasn't then. I'm not
sure how good the surgeon was, but I guess we will find out.

I am super depressed.Because my husband and I are self employed, we own a retail store., I cant just quit or take a leave of absence. I dont even know why Im posting this, Just feeling really down and hoping for some inspiration. Im still suffering from the concussion, surgery pain, another brush with my mortality. My hands both hurt and have limited function, from the crash even though they said the scans did not show broken bones. Thanks for letting me unload. xoxo

TNpotato

georgie61- ((HUG!!)) I'm so so sorry you're going thru such an ordeal after having already gone thru BC!

I wish I had some brilliant words of wisdom or inspirational sayings to make you feel better, but please know that I'm sending you many virtual hugs and healing thoughts during this crisis!

You said you were still in pain from the crash/surgery and that can really make one depressed. Have you talked to your doctor about the pain, or how you're feeling mentally?

georgie61

Thank you potato. I needed the hug. I,m on an anti depressant and pain killers. Unfortunately, that just seems to make me feel more depressed / hopeless?.. I couldnt even keep my follow up appt with my surgeon monday because I couldnt handle the thought of 10 hrs of driving just looking at my scars. The problem with living where we do. My cancer tx is 220 miles to the east of us in salt lake city, and reno is 280 miles to the west of us. DH and I actually lived in Kirkland right after we were married in 1982. I wish we still were, we could great care at "home".

TNpotato

Holy cow! 10 hours of driving to see your doc?! Now THAT'S commuting! And I thought we had it bad when we lived in Bawwwston. Heck, I complain about driving into Seattle! lol How in the world did you do chemo and rads?!

Maybe tomorrow you could call your doc though and tell him/her that you are feeling really bad even on the meds? I'd recommend that cause sometimes anti-depressants can actually make you feel worse and you may need to work with your doc to try another medication. My sister tried several different meds until she found the right one for her. But it took a lot of trial and error to find the right drug for her, and there were some scary times at the beginning where her depression was worse on meds than without.

Hang in there, georgie! ((HUGS)) I'll keep you in my prayers tonight and I hope that tomorrow is a better day for you!

georgie61

thanks potato. We always spent the night in slc after chemo but drove back and forth. For rads, I lived there for a month at the American Cancer Society Hope Lodge. I WILL

will see if there is someone to talk to on the phone tomorrow. I appreciate your concern xoxo

Cocker_Spaniel

Oh my God Georgie what a terrible thing for you to go through. I don't even know what to say, just the picture I have of your story in my mind and the trauma you went through is so darn awful. . Obviously something bad happened around that corner out of your husband's sight. I so hope you are feeling a lot better but TN potato is right what a heck of a ride to see your doctor. Don't give up on the antidepressants because they sometimes take a few weeks to kick in before you notice any benefit but if later you don't feel better there are lots you can try until you find one that suits you. All I can send you is lots of love, warm hugs and prayers. So hoping you feel better soon. xxx

Cathytoo

georgie61....OMG! So sorry to read this news. When I first started reading I expected to read that the cancer returned. As bad as this accident is...you will recover and go on with your life. Unfortunately, sometimes rain drops turn into torrential storms. You've been through so much. But, soon everything will be a memory. You've been so strong before...now you need to be strong again. I hope every day is better for you as you recover back to good health. Please keep us posted.

Valstim52

Georgie61, sending gentle hugs your way. when we can't do routine normal things like bend your fingers, it makes everything worse. Lean on us and know we are in your virtual pocket.

Val

Jacklin

So sorry to read Georgie61 about your misadventure. Gentle hugs, know that we're here for you.

ScotBird

Georgie I'm here too, sending gentle cosmic hugs and loving kindness to you from Scotland. You WILL get through this and feel great again, maybe not soon, but eventually, and each day is a new day when you might feel a bit better, or at least not so bad. Just breathe: hope and love are all around you. Sending healing thoughts to you today. X

anotherNYCGirl

Georgie! I am sooo sorry to read of your fall, - but also glad that it is not a cancer episode! Your description reminded me of the image of the olympic bicyclist who took a scarey looking spill as she rounded a curve the other day.

Takes time but you WILL be fine. TRRRY to be patient! Be good to yourself and rest and relax!

Wishing you a speedy recovery!!

LoveMyVizsla

Georgie, you know how strong our bodies are, you recovered from chemo/surgery/rads/recon. You will cover from your accident too. I'm sorry you have to worry about your business. I drive from Anacortes to Seattle for my treatments, but it's nowhere near the drives you have!

We are all here for you, you know that. Come here and rant and vent. But let us know how you're doing.

Lookingforward66

Hi ladies,

I need to vent. All worries. Just got back from ENT (ear, nose & throat) Doctor that removed a polyp next to vocal cords 6 months prior to my finding my cancer. He told me at the time that it could come back. I've been doing a little coughing and hacking, thinking it's allergies. Went to him anyway just to get a check up. Long story short something growing in my sinus in one spot. Wayback of tongue, where you can't see, there is something growing there too. Also left side of vocal chords not working correctly & can't see why. Therefore have to have CT of chest, throat and head. Get it done next Friday afternoon. So now is my worry time. I'm just praying that the statistics hold true with me that TN normally comes back in lungs, bone or brain. And this is not a metastasis. Keep me in your thoughts and prayers I'll keep you all posted as I go along.

Best to all

Marsha

Cathytoo

Lookingforward66...of course, you are worried. I am hoping, along with you, that this is NOT related to TN at all and that it's something that can be handled quickly. Please keep us informed. ❤️

Allydp

Georgie - I can't even imagine what you're going through right now and just so very sorry. It's not fair that you're dealt this hand on top of cancer. It's just not. I know you feel alone, but we're all here for you. I agree with Cocker, please tough out the antidepressants and if they don't start to work soon, talk to your doctor about switching them up. Sometimes it takes a little trial and error to find the right combination that works for you. Sending you gentle hugs and tons of healing prayers.

Lookingforward - by all accounts it sounds like that nasty polyp might be back! Your doctor even told you that could happen, so as an outsider looking in, I would be much more inclined to think that's causing your issues and NOT cancer. But I understand being worried and we're all in your pocket as you wait out the testing to get definitive answers. Please keep us posted and hang in there as best you can. Sending lots of hugs.

ScotBird

Lookingforward I'm thinking of you my dear. Also hoping and believing this will turn out to be benign. XX