Calling all TNs
Comments
-
Yes Cathytoo, do you think it is too late after the infusion to be an allergic reaction? Was it 2 weeks?
Welcome Koala! We are glad you are here.
Cocker, I am so very sorry for your loss of your beloved pet. Sending you comfort.
0 -
Thanks for the warm welcome, everyone. Not a place I would choose to be, but happy to have people traveling this road with me to keep company with. You all understand in a way that no one else can.
I start chemotherapy (TC) on March 9th, and I did tell my doctor's I wanted a port installed. However, the surgeon says he prefers to wait until 6 weeks post BMX, so there are fewer complications/issues. So, because I'm pushing to start chemo within 30 days of my surgery, I will have my first chemo without a port.
Cocker, so sorry to hear about your beloved dog. At least you know Tessa is no longer in pain, and in the long run, that's what was best for her. Here's a quote my sister sent to me that i found comforting:
"Grief never ends... but it changes.
It's a passage, not a place to stay.
Grief is not a sign of weakness, nor a lack of faith...
It is the price of Love."0 -
Annie - I am holding you close to my heart across the miles. I am so very, very sorry for the loss of your precious Tessa. I know how much you are hurting. Be strong, sweet friend and know that you will someday get to greet Tessa again.
Hugs,
Linda
0 -
Oh Linda so good to hear from you. I hope you and your beautiful girls are well and happy. Yes I told Tessa before she went that I would see her in Heaven and to wait for me. Please come on more often I miss your posts so much. xx
Ally I caught that hug and it made me sure that Tessa will be well and happy again. Today all I wanted to do was go and get her back.
Thank you ladies for being here for me. Love you all and Mike so much.
0 -
While i was reading about Tessa and how she died of cancer and then we have all of us here who are dealing with it and many more in the stage 4 forums too....I feel generally helpless thinking about the disease . Perhaps a cure is just around the corner and when it arrives what huge happiness for everyone and at the same time what huge regret for all the millions of lives lost so far because of the lack of cure for this disease... as i kept thinking about this, i get a call from my mother. My uncle ( fathers elder brother ) gets throat cancer diagnosis today..non smoker, non drinker...active, healthy and a reputed academician who dedicated his entire life to research. From no family history of cancer ..to two cases already ..him and me, in a matter of 3 years!!
0 -
BanR I know how you feel. Even though Tessa suffered so badly as no dog should, it also frightened and saddend me as well. There is no end to this terrible disease. All the millions that have been poured into research and yet no cure found. The only thing we have had since my mother died at 48 years and my grandma not too long after, all of those years ago, is an improvement in treatment yet no cure. How long is this going to go on for. What about our family and relatives and yes, the other people on this site. Is this epidemic levels, I think so. Nearly every day I hear about someone being diagnosed, going through treatment or dying with this fecken awful disease. Your uncle, living a healthy life as much as he can, and yet he gets diagnosed. I feel angry that this is happening and it makes me scared for my family. Where is all the money going that is raised. How long do we have to wait before we get that huge happiness and how many people and animals are we going to lose to it. How many times have we prayed and how many times have no good come of doing just that. What can we do about it??? How can we band together, all of us, on this disease. Today I am questioning God. Is there one and if there is why is he not stopping this. Tessa didn't deserve this horrible cancer. She hurt nobody, ever. I could leave that beautiful girl with all my grandchildren safe in the knowledge that she would never hurt them and they would be protected by her. I feel so down which is unlike me, but I feel it's time something is done about this.
0 -
Cocker, so sorry to hear about Tessa. hugs!
Have been away for a few weeks and sorry to see so many new faces as well. Welcome to our little fabulous group!
After chemo and radiation, did anyone lose their eyelashes AGAIN??
I finished chemo end of Sept, finished rads mid-Jan and now my eyelashes decided they don't want to hang on anymore...again. 0 -
Stef, i lost mine 3 times!
0 -
Hello all,
I would love to hear a long term survivor story from someone that had significant tumor size left after chemo. My fear is that all of those who have survived disease free are women who had a pcr or near pcr. After ACT, the tumor taken out during surgery was 3.2cm. They gave it a score of 2 (in terms of response to chemo, with 5 being the best).
If you or anyone you know is a long term survivor that had a high residual cancer burden, I would love to hear from you! I plan to collect these stories to read on days when I need encouragement.
I will be starting rads and hopefully a clinical trial doing concurrent Cisplatin. My MO has also discussed adding Xeloda after this.
Thank you!
Ally0 -
Hi ally,
I am currently in the same situation as you, I had ACT and still had a tumor size of 3.2 cm and
8 out of 9 nodes positive, I was so excited to finally be finished and then to get the news that I still
had all this residual cancer left I was really devastated. I am going to do the carboplatium/xeloda trial that will be starting shortly. I just finished my radiation and can't wait for my skin to recover, This is definatley a long road, never thought I would be so excited to sign up for more chemo:)
Your MO discussed doing Xeloda after the carboplatinum?
thanks
Rose
0 -
BanR when my mom was diagnosed with non hodgkins lymphoma she said to the doctor, "How can this be? Cancer doesn't run in my family." The doctor's response was, "In all of the families where cancer DOES run in the family...someone was first." And man did that turn out to be a true statement. She was one of ten kids. Within a year of her diagnosis, two of her sisters and two of her brothers got cancer. Each of them different cancers from breast to lung to colon to lymphoma. This beast does not discriminate!
0 -
You are right Al ! Its is really strange.. As for me, my gene profiling was all clear and i was happy that it is just me, for some reason something went wrong with that single cell of mine which managed to form a tumor, but it is not something which i have inherited or passed on. And then my first degree relative gets diagnosed in two years...and neither me or him have any lifestyle issues too.. Apart from the air which we have to breathe however it is and all those radiations which we have to face however it is. I am pretty sure that all this is 90 percent somatic...absolutely no role of genetics...its just random...or is it because nature is planning something else for mankind next??
Cocker...I always prefer to call you cocker instead of Annie! I find it cuter and that is the way I will always address you and each time I type it, I will remember dear Tessa!! I perfectly get your anger and helplessness...i feel the same too. I have noticed something...SO many criminals are in jail, so many in death row...none of them get cancer. So many notorious robbers, terrorists are hiding here n there....they have to be captured with great difficulty and punished...they dont naturally die of cancer. Only we do...normal citizens of the world, including children too.
I came across a weird quote in facebook a few months ago..." Dirty minds give rise to more diseases than dirty streets do" I instantly went off...most people have this notion that pure and positive souls dont get diseases, especially cancer. Cancer is a disease which can be cured with strength, spirituality and positivity and cancer is caused my negative vibes etc etc. What a misconception!!
So till the time a cause and a cure is found...most people ( esp the ones who have not faced cancer) will continue having their own theories about this disease.
0 -
Dear Cocker
I am so sorry for your loss. We had to say goodbye to our 2 little dogs last Sept., so I completely understand what you are going through. My dogs were of great comfort while I was going through treatment.
Take good care of yourself and your family during this difficult time.
0 -
Cocker we had the world's greatest dog. A pug named "Ed". We had to have him put down a week after Kath was diagnosed with her TNBC. When it rained, it poured. Very sad day indeed. So sorry to hear that your time with Tessa has come to an end...for now. "For now" is the key. You'll see her again. Stay strong and God bless.
0 -
hugs Cocker!! Tessa has crossed the rainbow bridge.
LifeAloft-- I am doing neoadjuvant chemo. Started the 19th Feb. Friday is my 2nd AC. 4 AC then 12 Taxol. Then lumpectomy followed by 6-7 wks of radiation is the plan
I am finally feeling like normal about 8-9 days post AC. Not looking forward to starting all over again on Friday. Hoping the side effects are the same so I know what to expect and how to manage. I see my MO Thursday and may ask about Prozac or something to keep the crying for no reason at bay!! Wasn't expecting that S
0 -
Has anyone noticed that this wonderful thread is coming to 1000 pages?? Has anyone heard from our starter "Titan"?
I've been here since Page #2. So much has happened since then....Wishing all of you love and happiness and most importantly LIFE.
0 -
Navymom. I had noticed! And no, not heard from Titan. Wow! page 2! Amazing!
0 -
oh wow! 1000 pages!
0 -
I've been doing some reading tonight about Metformin possibly helping us triple negs, interesting stuff. I was diagnosed insulin resistant a few years ago but stopped taking Metformin. Has anyone talked to their docs about this?
0 -
LifeAloft: Back in 2012(I think) I asked my MO for metformin because I saw the research info too. She said NO. She didn't want to manage meds not related to my treatment plan and wanted to see more research results. But I still wanted it. So I went to see my PCP. He said YES and wrote the script for 850 twice a day (the actual study dose). But he wanted me to get a baseline Hgb A1C...it was 6.5. So I am considered Diabetic. Good Luck in your quest.
Happy 1000 pages to all the wonderful women and men who have visited here for information, comfort and support. Whether you were on the giving end or the receiving end, you are an important part of this great thread.
0 -
LifeAloft....I was diagnosed TN in November '15 and immediately began researching. Of course, Metformin came up as very important to prevent a recurrence. My primary doctor immediately said OK and wrote a Rx. But when I chose a MO, he said absolutely not because it could create problems with monitoring a healthy blood sugar. Right now I'm in the middle of Chemo and then I will be doing RADS. When all this is done I'm going to investigate further, along with taking turmeric (also recommended for TN's.) My feeling is whatever can help, I want.
0 -
Lifealoft, I have been taking the study dose of Metformin since about a month after diagnosis with TNBC. My PCP prescribes it, because I expect to be taking it indefinitely, but I had the full blessing of my MO, who knew one of the researchers involved. I am not diabetic, but was diagnosed with PCOS many years ago, which usually includes some insulin resistance. I've been taking 850mg twice a day for over a year, and do not have any significant side effects.
0 -
Thank you for the info ladies! I plan on asking my MO when I see her next. I was on it before with no issues, I figure it can't hurt, and if it will even possibly help...why not?!?!
Thanks again!
0 -
Well, just left my MOs office.... We are doing an ultrasound sometime after my final AC on Monday. If it doesn't show improvement we may go straight to surgery instead of moving on to Taxol/Carbo. Not sure how I feel about that. I didn't think to ask if we would finish chemo after surgery. This is such a roller coaster.
0 -
happy 1000 pages everyone! Thanks navy mom for reminding!
Life aloft , metformin not recommended by my oncologist too. Benefits, if any, not yet fully established but long term risks associated will be high
Al, and everyone else. Sorry to hear about the stories of your furry friends. The only reason is what stops me from having one. The attachment level with them is too high but their lifespan is too short. A dogs love for its master is the most selfless kind of love!
0 -
Wow, 1000 pages! And Navymom, page 2 member is awesome!
LifeAloft - there's a member here named InspiredbyDolce who has done tons of research of Metformin. I'll PM her and ask her to send you the studies she has. I'm so sorry you might be heading into surgery early. My heart and prayers go out to you right now. Sending you big hugs. xo
0 -
Finished my radiation today. Tomorrow the ovaries come out and that's that. Can't wait to start healing!
Big hugs to Cocker and everyone here, whatever step you are at.
0 -
Hi all, 1000 pages!
When we TNBC had the Metformin discussion in 2012, my PCP was very willing to prescribe it for me. He said it is an old, time-proven drug and wouldn't harm and possibly help. My only trouble with it is explaining why I take it since I'm not diabetic. Various doctors over the years have all but told me I'm crazy, that I must be diabetic. I truly love my PCP.
0 -
Hugs to you Peabrain, we are so in your pocket for tomorrow. Praying for surgery to go smoothly for you.
Happy for you Jan, so glad it has been a positive in your treatment.
0 -
Big hugs to you Peabrain. The oophorectomy isn't all that bad. I was pretty beaten down by then from chemo and surgery so I just took it very easy for a good 8 weeks before really getting back into my full-on daily routine. Can't wait for you to be done! Please let us know it goes when you can. Sending you prayers. PS: good riddance rads!
LifeALoft - I reached out to InspiredbyDolce. I hope she contacts you regarding the Metformin studies.
Cocker - hope you're hanging in there. Continued prayers to you. xoxo
Hi to everyone else! We've had such a mild winter here in Michigan, but have suddenly been hammered with over 2 feet of snow in the last week. I think the groundhog lied to us!
0
