Starting Chemo March 2015

Jackbirdie

Mauren- just wanted to say we are in your pocket for your biopsy next week. It must be so scary but will be good to get answers.

Bekah- you and your family are just lovely. I'm so glad you got to have that memory making vacay.

BB- I feel the same way. Glad we seem to be moving on. But I miss everyone.

I ended up going off the Tamoxifen in December. It was due to the liver issues and the mood issues which were devastating. That improved with the AI but other problems replaced them. I did some research when I was experiencing the devastating, nearly suicidal moods. it turns out there was a clinical trial in which they tested the ability of Tamox to treat acute mania in hospital/crisis settings. To me, the fact that they even considered it told me considerable anecdotal evidence existed that Tamox can significantly alter/lower mood. Just sayin

I guess I always hoped that if not returning to normal life, I would adapt to something acceptable. Instead, the life I have returned to so far is a big disappointment. I keep trying different things, trying to reframe. Trying to accept. It's a work in progress. But I never would have gotten even this far without all of you. 💗💗

KBeee

Maureen, How scary! Please keep us posted.

BB, it is good we don't have as much time to be on here as we move forward, but I do miss everyone too

Bekah, looks like an awesome cruise! I head out on vacation next week. I am sooooo excited!

Katie, it is hard adapting to the new normal. Remember that you did not fail on the drugs. The drugs failed you with all of their miserable side effects.

eheinrich

Hi ladies!

I haven't been on in a while. Mostly following up with y'all on FB. Maureen, I hope you have good news to report. Sending all my good mojo your way. Katy - I wish there was a way to take your pain away. Sucks that you are dealing with so much.

I'm fine. Still trying to build a new boob. Essentially none of the fat from the last grafting took. I'm kind of over it. I thinkI'm going to try one more time and then call it a day & get a big tattoo to cover its ugliness.

hugs & kisses

e

jumbledbamboo

i need to find the cool kids on fb!

Maureen I'm thinking of you and your results🌼

I am here ! I had regular fu with orthopedic surgeon. I had more hip pain but I just hoped it was nothing. Anyway, he found spots on my hip. He isn't sure what they are. He ordered an MRI. So I went to my oncologist. She ordered a bone scan and blood. At first they said all looked ok. My tumor markers are higher now than during treatment. It's 42.9. so yes I know there are higher numbers but for me it's high. Anyway, I have been having that tiredness I got like before. I just am not delaying my trip to Colorado. No way. The pain from the osteonecrosis is awful and stroke never goes away. I am really lucky my life is great in so many other ways! Getting my son ready for school and harassingmy husband as usual. Now I wait for results. I will update soon. Thinking of you all

Italychick

Jumbledbamboo in your pocket, fingers and toes crossed for benign results. When do you get results?

jumbledbamboo

i have a stat bone scan and it's not until the 9th. What a long time to wait. Ridiculous. MRI is the day after. Then doctor's on the 12th

KBeee

Amber, keep us posted! Are you on fb? If so, pm me so we can add you to the group!

ksusan

Good thoughts to you, Amber.

SpecialK

jumbled - don't be too alarmed about your marker number, they can escalate if you have inflammation - and if you are having pain, you most likely have inflammation. I had surgery in May to exchange my expander for an implant and swap my other implant and had been having both hip pain, from an injury, and pain toward the axilla of the cancer breast. My marker went into the 40's, which had never happened before and I had an abnormal chest area on PET. What they saw turned out to be a 3cm ball of suture granulomas and inflammatory tissue right where the cancer had been - and it was removed during the surgery. I had a marker done a couple of weeks ago and it was back into the 20's now that all of that was removed. Hope they can get to the bottom of your pain and worrisome imaging, and that it is something benign, I know this is scary.

Carrie37

Keep us posted Amber! I hate the waiting. I'm waiting for CT scan results after I found a lump near my collarbone. Just need answers.

jumbledbamboo

It is scary. I am thinking that the AVN I have might raised my numbers. Thing is my numbers are higher than last year. Just going to go day by day. I am worried because I'm having the same symptoms. My schedule is messed up again. I j feel sick all the time. And my heart races when I go outside in the heat for a just a few minutes. Also, I have vitamin D deficiency. I am always anemic. Just kind of working it out. They also have never mentioned my TM numbers. Ever. So, I am glad they are on top of it. If the AVN is the cause, then so be it. I just know that having more spots on x-ray, and possibly cancer or more AVN, hip surgery might be in the cards yet again. The hip surgery was a really hard one. I have so much pain. It just keeps getting worse. Ok, I'm done ! Thanks for listening everyone!

jumbledbamboo

and thank you Carrie and Italy and ksusan and e😘

littleblueflowers

Thank you March sisters for passing the magic bracelet on to us April ladies! Here it is on top of Going to the Sun road in Glacier NP. It got me through my MO check up and i passed it on to our beautiful Positive Spirit. I made a charm out of a twist of Mountain Goat fur so that we can all be as strong and agile as thwm even in rocky situations. Blessings!

Jackbirdie

Awesome, Jen! I, too, admire the Mountain Goat! Enjoy the mojo! 💗🙏🏻

Carrie37

Love it!!

TerryMarie

Hi all , I haven't posted in quite some time. I was looking for the FB group but can't find it. Could someone please advise how I can join? I am alright since my last post (whine) , I'm experiencing side effects from anastrozole (arimidex), I was put on the brand name to see if the side effects are less than the generic , they are less when it comes to joint pain but it's still present. What's happening now are pains in my head, its been 3 days now, I don't know if its a side effect or a result of some stress im under about possibly selling and moving house. I'm not feeling anything other than the pains on the left side which sometimes go into my ear. Very weird.

KBeee

terry Marie, pm me and I can get you into Facebook grou

PrincessOfMeh

Wow. Came back (a year plus later, lol) to check on everybody and chime in I'm doing okay. I've been back at work (writing) since shortly after rads ended last Dec. I walk 2-4x/week depending on weather & Pokemon Go strategy (LOL). Anxiety has been my biggest BC hangover and I still struggle with that a lot. Physically, I'm fine, though, and glad to see so many are trucking along too.

rleepac

PrincessOfMeh so good to see you!!!! I"m glad to hear you're writing again and maybe you can PM me your latest book...I think I can finally focus on reading

Anxiety is a killer. Sometimes I feel like BC made me a drug addict LoL. I have nausea... "here, take some Ativan". I have anxiety... "here take some Ativan". I have chest wall spasms from recon surgery... "here take some Ativan". Then a single nurse says "you need to try to wean off the Ativan". Really?!?!?! Then why do you give prescribing it!?!

I don't feel back to normal yet at all. I'm trying but it's tough. I have a lot of joint pain and now my CBC is a little wonky showing some mild anemia and elevated AFP tumor marker. The CBC should be great because I had an iron infusion in January...don't know what is causing that! And the AFP has doubled in the past few months. It's still not high enough that most docs would worry but doubling is a little scary (AFP only done because of elevated liver enzymes several months ago that have since resolved).

Fatigue is not so bad but endurance is low.

Chemo brain still rears it's ugly head more frequently than I'd like but I'm coping.

Still working 3 days a week instead of full time but I have a supplemental disability plan that makes it really hard to be motivated to work full time LoL!

Anyway...good to see you back and thanks for checking in

Bekah

ksusan

Hi, Meh. Nice to see you. Most of the March/April 15 chemo people are on Facebook at this point.

jjohnstonkay

The Charm Bracelet Group

Hi, please allow me to introduce myself. My name is Julie Johnston, I am a breast cancer survivor and a doctoral student working on my dissertation. I have received permission from the moderators to recruit participants for my study of breast cancer survivors weight management issues and it is posted under the research, trials, and studies forum. In the course of interviewing a participant, she told me about a group who passed a bracelet around and each person added a charm. I thought that was such a sweet idea and was thinking about that and thought your stories would make an uplifting book for other breast cancer survivors and was wondering if you and the other women would share your stories, and the charm you put on the bracelet, and why you selected that particular charm, and what it meant to you. I write books on the side and would like to write a book about your experiences. I thought of calling the book 'The Hope Bracelet" with a picture of the completed bracelet on the cover and a picture of each charm leading into a chapter of the story behind the charm. What do you think? Could you contact the others and ask them?

Julie K. Johnston

jjohnstonkay@gmail.com

865-274-9519

ksusan

Hi, Julie. I'll copy this to the Facebook group when I'm next on a computer if someone else doesn't beat me to it.

ksusan

Hi, everyone. I see it's my two-year anniversary of beginning chemo. Time flies--or not :-)

How are those of you not in our Facebook group doing?

Trvler

Wondering how Special K is doing?

BBwithBC45

Hi Ksusan,

I'm not in the Facebook group. I was thinking of our chemo group a few days ago too.

I'm still dealing with reconstruction surgeries. Tamoxifen sometimes makes me achy.

I have a mammo on my "healthy" breast coming up in May and I'm terrified, because it has been hurting.

Allison, SpecialK is quite active on these boards. I see her comments often on some threads that I'm following.

ksusan

Best of luck with that mammo--always scary stuff. Please let us know how it goes-- people would jump back on the thread to support you!

Trvler

Thanks, BB. I am sorry you are having pain. I know how scary that is. Hoping it is nothing and you can move on.

Meme117

Hi i want to thank you for sending me the bracelet, it is so needed during this crazy point to my cancer journey. Thank you for the cards!

for those not on facebook - I was dx with mbc in march after a ct, pet scan and lung biopsy. Took me totally by surprise and its been a crazy rollercoaster of emotions. I had lung surgery last week to remove the mets and meeting with ro this week. Ive met with 3 oncologists at different hospitals and will have a treatment plan by the end of the month. I try not to think too much and stay one step at a time

Italychick

Maryellen, so glad you have the bracelet. Hugs, think about you every day!

BBwithBC45

Mayrellen, I'm so sorry to read about your bad news. You got what we are all dreading. Sounds like you are working with your doctors on the plan.

Sending hugs to you.