Starting Chemo March 2015

Jackbirdie

TED Talk on Eating and Cancer

Theresa- I came across this and thought you and your DH might like. Along with all March sistas. I don't know if you've ever watched TED, but there is some amazing intel here.

Italychick

interesting, tomatoes and strawberries. I'm going to look into the topic more. Thanks Katy

Carrie37

Lee, I'm sure you know this but doctors won't call in for narcotics anymore. You have to get a physical prescription written by the doc and take to pharmacy. I find this annoying but understandable. I made them give me more meds before I even left the hospital with these effing TE's. I can't imagine what you are feeling. I would call back and insist on an appointment. Sometimes doctors have no idea what their front office staff is saying to patients. Unacceptable. Otherwise, Indiana isn't too far from IL, we can meet half way. 😊 Seriously, maybe even call your BS? Or PCP? Two weeks is too long to wait for a pain management doctor. This is all coming from the girl who can't sleep because of the pain/discomfort in my TE's. I moved to the couch. Meds and trying for more sleep. Ugh! 😒😒

IndyGal35

Thanks again for the support. I was doing a bit better until about 10 days ago, and I think the swelling from rads has put extra pressure on the TE, because I got very sore again. I'm hoping it eases up as I get further from my rads end date on Wednesday. (Tomorrow! Yay!!!)

In better news, my cousin in LA connected us with some friends of hers that were relocating here so he could get on the liver transplant list. He's in his late 30's and has been waiting 3 years out at UCLAthere with no luck. We've been able to provide support for them as they're looking for housing, schools, etc. He has only been here for about 2 weeks, and he just got the call for a liver. They are testing and prepping him to see if he's healthy enough for transplant. (He met the bracelet too!) I can't imagine suffering like he has for so long, and I'm praying he can get this opportunity for a new life. It really does put things into perspective for me. If they transplant, it'll be this morning. I'll keep you posted.

Trvler

Lee: Yeah on finishing your rads! Ugh on the pain and experience with the doctor. I am sorry you had such a crappy experience with the doctor. I usually find my first firing instincts are right about someone. I hesitated about my MO, but each time I saw her, it was just more obvious. I hope you can get some relief. I hate hearing you are in that much pain.

That's great about your cousin. Keep us posted.

slothabouttown

Lee, I'm so happy for your friend! Was the move to Indy because there is less competition for transplant/shorter waiting lists? If so it paid off quickly!

Sorry for everyone battling to control their pain. Why do so many of our MOs neglect this area of treatment and treat us like we're whiners or junkies? Where's the compassion?

I very unexpectedly fell in a rabbit hole last night. I stepped outside my safe zone of my three favorite topics and before I knew it I was reading about recurrence and stage 4 diagnoses and I was having a full on anxiety issue. Right before bed too. I hadn't done that in a long time but it sure was easy to go from zero to 60 on the anxiety meter. Reminded me how much space this disease takes up in my brain and I resent it for having that kind of control over me still.

The pinkwashing and related posts remind me of when I was in my early twenties and started losing friends who were also in their twenties to AIDS. those were incredibly sad and scary times and we were all so unprepared for so many young, vibrant lives to be lost- and they were never easy deaths. By the time the red ribbons started showing up and celebrities started talking about AIDS on awards shows and holding benefit concerts, the gay community looked more like a prisoner of war camp full of skeletal men with hollow eyes, ravaged by this mysterious and deadly virus. The ribbons in this case were truly conversation starters and I do believe they spread awareness, but in the end, it was still the gay community working on a grass roots level that was most effective in getting breakthrough drugs out of the labs and into the hands of the people who needed them. Now it's become so easy to slap a ribbon on something and never think twice about the work that needs to be done or the lives in the balance behind it. If you can, watch the documentary "how to survive a plague" about the AIDS crisis and mobilization of the group Act Up to influence the CDC and spur AIDS research. It is truly inspiring and gives some context to the "ribbon" mentality that is so firmly settled into our culture today.

ksusan

Agreed, Sloth.

eheinrich

Lee: I can't believe they won't give you a script to get you through until a pain management appt opens up. I mean really? I hope you get relief soon. That's so great about your cousin - keep us updated!

Sloth: I never even scroll the active topics anymore - maybe once a week at best. Too scary. I've been sorting through stuff left-over from a yard sale I had w a friend this summer - selling some stuff on eBay, finding consignment shops, a pile to donate, etc. I was going to pile up my chemo hats/scarves & weird mx bras to find a BC group to donate to and then thought - what if I need them again? ugh

Trvler

Sloth,

Interesting and thanks for sharing. I remember around that time my dad was diagnosed with prostrate cancer and he got upset about all the attention to AIDS at the time. He has since passed.

I was having lunch with a friend and she was telling me how her sister suffers from chronic pain from a botched surgery and has a lot of issues because of it and how they give her a hard time about her pain meds. So I guess it is not exclusive to cancer patients.

Finally put on my big girl panties and called my BS in NOLA. I was stressed out about that node thing and I needed to call him back but I just needed a few days off from thinking about it all. I was convinced they were going to change his mind but they never even contacted him. I guess the MO is waiting for me to see the BS, which I am not going to do. I know this is all confusing. I am officially switching MO's and I hired the RO from her facility. I go tomorrow for my prep. I guess I will start next week.

Question about rads: Did all of you go 5 days for 5.5 weeks? She is recommending 5 days for 3 weeks and then 4 days because that give you a better chance to heal, she said.

ksusan

If I need them again, I'll insist on shiny new stuff. NOT keeping stuff around when the odds are against my needing to use it again!

eheinrich

I know, Ksusan. It was just this weird reaction I had. Getting rid of it all will be a good step.

pboi

I had those same thoughts Eileen, what if I need them again? But thank you ksusan for your post and positive attitude. I need to remind and convince myself of that...odds are I won't need them again! Getting rid of it will be a good step!

I'm feeling well rested today, for the first time last night slept 7 hours uninterrupted since chemo began. I usually wake at least twice a night due to insomnia/night sweats. Now wondering how I did it or did I just get lucky, want to sleep like that again tonight

PB

Jackbirdie

Sloth- sorry about the rabbit hole. They are everywhere, and harder to see them and avoid them in the dark. I watched that documentary. So moving. You are very eloquent. When you're not being very funny. I hope today/tonight the sun and the moon shine a little brighter so you can keep your feet on solid ground.

Lee- sending my best to your cousin. That bracelet has been imbued with plenty of love. I know that for sure. Keep us posted on his situation. And yours.

IndyGal35

beautiful and sad words, Linda! Did you see Dallas Buyers' Club. It was based upon a true story. Brilliantly acted and very eye opening.

It's not my cousin that is getting transplanted. It's actually a friend of my cousin's. From what I understand, the population in LA is so high that they transfuse at a very high MELD score. This means you could easily die before getting a transplant. Apparently, IN transplants at a lower MELD, so it makes transplants available quicker.

I'm getting rads 5 days a week for 25 doses (2 greys/day for a total of 50 greys over 7 fields). My RO said that I was fine to miss Labor Day, but she didn't want me to miss more than a day a week. Really, she preferred me not to miss at all, so I've gone M-F. I just started to burn around dose 21. It came on all at once under my foob and my armpit. It's very tolerable and feels like a sunburn. They said I could use EMLA cream to help with the sting of needed. (It's not too bad until I sweat.) Hope that helps

Trvler

That's interesting about who gets the transplants. Sorry I misread about your cousin. That helps. I have to have 28 she said.

I want to toss EVERYTHING that reminds me of cancer. The second I finished those stupid injections I packed them up and sent them back. The only thing I am going to keep is my dominatrix girdle for stage 2.

DavisD

Lee-that really sucks being treated like a drug seeker when you have obvious pain! I agree the doctor may not be aware and it would be worth calling back and relaying how long it will take to get into the pain management doc. I would share too I've had this same experience since I've had chronic pain for about five years but I guess it's fortunate in some way, that narcotic meds don't seem to touch the nerve pain...I'd definitely be addicted if they did!

Sloth-falling down the rabbit hole is something i'm familiar with. I know you have what it takes to climb out. Thank you for sharing the history of the AIDS research/documentary. I'm going to watch it if I can find it on Netflix. Stay strong

Allison-I had six weeks five days a week of rads..last five were boosts. Good luck tomorrow

Had a pretty decent day today. thanks for all the support!

Trvler

Thanks, Diane. I am glad you had a decent day.

DavisD

I forgot pb-MO is going to give me the order for repeat MRI when I see him after Herceptin next Tues. I guess he will let me know his recommendation regarding Tamoxifen as well. The tumor was 75% HER2, 5% ER and 20% PR. Anyone have similar combinations?

Jackbirdie

look! It's working!

http://www.nydailynews.com/life-style/health/makeu...

eheinrich

Nice! Well done

Jackbirdie

E- I thought of you and your snarky side when the person defending LGFB said cancer patients should check with their doctors.

Right.

"So, Doc, should I go with the MaxFactor or the Smashbox?"

Ridiculous

jumbledbamboo

Hi all! Quick check in. Implant was fine. I will have 2 more surgeries at least to make them look right. I felt like a dope trying to tell the doctor I was getting a lift too. I have one tube. I made the mistake of sleeping on the reclincer and my neck is jacked up. Oh well. SO I am pretty medicated. I saw some of you are in real pain too. I will send pain free vibes your way.

Jackbirdie

PB- thanks for checking in. Glad it went ok. Stay ahead of the pain. It's more fun that way!

pboi

Katy...you mean Amber right?

Amber...yes glad it went ok, and hope you feel better soon!

PB

jumbledbamboo

Thank you!

ninjamary

Hello ladies. Trying to catch up on all the posts. I'm down to my last 7 radiation beams. I'm burnt to hell and very, very tired anymore. I'm shocked about the tiredness and the level of burns I have. I really thought my RO was exaggerating all these SE a couple of weeks ago. It's the first time in years I have not worn a bra 24/7.Hopefully the healing will be quick.

Trvler

Jumbled: I am glad you are doing well.

Katy: Who is Breast Cancer Action?

Mary: I am sorry. Ugh. You have had a rough road. Are you going 5 days a week? I am wondering if I my RO is the exception doing 5 and then 4 days for 3 weeks.

SpecialK

trvler - here is the link. BCA is an activist group whose goal is to refocus and galvanize the "awareness" movement into something more pertinent to the reality of breast cancer:

http://www.bcaction.org/

Meme117

Trying to catch up. Off to my 11th rad treatment, bleh. Boob is a bit red but ok. My RO is doing 33 Monday thru Friday. I missed 2 and he was not happy, he does not want me to miss again. According to him, the radiation builds up so the best way to fight the cancer cells. He never mentioned going to 4 days and from his comment I don't think he would.

So sorry Mary your having a rough time.

Good luck E with your interview.

Congrats on being done Lee! And great news for your friend!! Prayers all goes well. With regards to the pain meds, is agree with the others call your other docs for a script, is there a nurse navigator?

BBwithBC45

Regarding the pain meds - a few times in the past I have felt uncomfortable, as if I was looked at as a drug addict. It may have been my imagination, I don't know. But I do know that nowadays the doctors cannot call in a script for a controlled substance. Instead, you have to give a physical prescription to the pharmacy and I don't think it is the doctors' choice. It's some new law, I suppose.

Also, I know of some doctors being sued for prescribing "too many pain killers" resulting in somebody's addiction or overdose. It's very unfortunate, that some people look to cash in, instead of taking responsibility for their own problems. This could be the reason why some doctors might be overly cautious before prescribing pain killers and patients with legitimate issues are paying the price.