Starting Chemo March 2015

Beachbum1023

she gets it?? Oh she is definitely one of us, invited or not she's in! I hope you are feeling good.

PrincessOfMeh

OMG, the Godzilla gnomes are AWESOME. LMAO!

SC_Coqui

People that are on the outside of this disease don't get it. I've had a few people mention someone that they know telling them of someone that they know that beat cancer through some homeopathic / natural way. Suuuuuure. It belittles our intelligence. It's not like we just sat back and didn't do any research on what we have and what the different prognosis are and medications.

An update on me. I'm waiting for DH in my hospital room. I've been discharged and I'm dressed and ready to go. He left Florida around 10 am so he should be here in about 2 hrs (if they don't stop for food).

What a "vacation". DH was sad, but it's like I mentioned to him, I would have ended up in the hospital no matter what, either here or home. I'm glad that they were able to have a good time. Once they pick me up we'll be home in about 4 hrs.

I watched the cancer documentary last night on my cell phone through the PBS website. Amazing documentary. I didn't know the history behind chemo and cancer treatments. I'm amazed too at how far we've come even in the last 30 years. People's perception of cancer and chemotherapy comes from movies like "Dying Young". They don't realize that was 25 years ago!

Trvler

No worries, Ninja. I am sorry about your mom.

Joanna: I didn't watch last night's installment yet. It was tough to watch the first night. It makes you realize how lucky many of us are to be living when we are, doesn't it? Those kid stories break your heart.

Beachbum1023

SC_Coqui, I am so glad that you are on the way out of there, and headed back home. I hope you feel better. I am so sorry that you missed the trip, but I hope you have many, many more trips on the horizon!

SC_Coqui

Trvler, I've only watched the first installment. I watched it on my phone.

I know what you mean. My mom died of renal cancer when I was 14. That was back in 1988. I don't know if things would have been different if she would have been diagnosed now since she was already at stage 4 when it was diagnosed, which is usually the case with renal cancer - even now. From diagnosis to death it was about 5 months. I do think though that the care she received would have been different. Back then the doctors weren't very open with patients. It was like one of the doctors in the documentary said, they were trying to spare the patient from worry since it was a death sentence. My mom believed that she was going to get better through chemo and radiation therapy because that's what the doctors told her. She never received anything past surgery.

shaz101

Wow, you've all been busy while I've been asleep. I see a theme in the subject. My most hurtful comment was when I heard my partner tell his son that I had 'chosen' to do chemo! Chosen REALLY? Why would anyone chose it? I NEED to have it or I may die, the Dr said I have a 40% chance of the cancer coming back within 10 years unless I do chemo and radiation. What I CHOSE was to give myself a life! Let me tell you, I'm a very patient person who doesn't like to cause a fight but... I certainly told him what I thought of his words! 

One of my sisters is very insensitive and a 'me' person. She told me that her and her husband were going to take life a bit easier as her 'cancer scare' had really shaken them. My sister had a mammogram at my issistance which was clear! That was her cancer scare! Argh I'm glad I don't talk to her very often! 

shaz101

G'day kazza and best of luck with your port and treatment. I'll be sending some lovely positive vibes your way.

SC I'm so glad your going home! It must have been frustrating for you all. I hope that the worst is behind you now. I must say though that your timing was great. In on the way there and out on their way back 

Katy, how's that rash going?

shaz101

SC can you share the link to the cancer doc? Is it something that I may be able to access?

ninjamary

Shaz,

I have no words for what your sister said to you. None.

PrincessOfMeh

My mother yelled at me during an argument recently and countered with "you aren't the only who doesn't feel good" That was...pretty funny, actually, LOL. I snickered like a mad beasty over that one for days and days. Still funny, honestly.

Trvler

Shaz: I know. If I have to hear about one more person's mammogram where they THOUGHT something was wrong and it was fine, I am going to scream. lol

( I don't mind it on here though for some reason.)

Trvler

Joanna: I am glad you get to go home today. I am sure you are looking forward to sleeping in your own bed.

Trvler

Finally buckled down and got most of my taxes done. I get so mad at how complicated they are and I have very little going on. This year, I might have spent 5 more hours making sure or at least trying to make sure it was perfect. This year I am saying f- it. Let them audit me. I hate to get political but with all the BS our govt does, they could make tax filing so much easier than it is. But as it is, EACH year it gets more complicated.

molly1976

Good for you, Trvler! By some miracle I did my taxes the very first week of February and sent them in 2 days before diagnosis. Thank goodness because I'm sure I would have made a mess of it afterward. Last week I paid my homeowners association dues online and used the wrong account number! It took me a week to figure out what I had done. No paying bills on my crappy chemo days!

I am going to shave my head tonight, the hair is falling out like crazy now. I feel kind of excited about it in a weird way, like it means this is now FOR REAL and I am in the middle of it rather than just at the beginning.

I also got my chemo via port today for the first time - WOW, so much better than IV! And that is with it still being sore from insertion yesterday.

wpmoon

In the mood of sharing stupid comments, when I told my brother about my diagnosis back in December he said "If it were me, I wouldn't get surgery. I'd just let it spread and go out with a bang - like travel the world until I died." uhhhh, no thanks. I'm only 27! I'd like to travel the world for the rest of my life! And another golden comment from him within that same conversation, "I think this is going to be good for you. It'll be life affirming."

Yeah... haven't talked to him much since then.

Trvler

WP: Your brother wins.

avmom

Shaz, I watched the first episode of the documentary. It's by Ken Burns, an experienced American documentary filmmaker, and it's called, "Cancer: The Emperor of Maladies", I think. It might not be available for a while, but pbs.org often posts entire episodes on their website. IVe been away from home last night and today, because I had to travel for a surgery consult, so I am recording it on my pvr. I think it's a three part series. Don't know if you can access episodes where you are, but I bet a dvd set will be available at some point. I did listen to a long interview with the filmmaker on our national radio network, and the interview can likely be played where you are. Think the radio network's website is cbc.ca, so the interview may bed available as a podcast. I think it aired last Thursday when I was driving to get my blood work done. His mom died of cancer when he was a child. If I can find the link to the interview, I'll post it for you

avmom

to listen to the interview with Ken Burns, go to cbc.ca. Then click "listen" at the top of the screen, and search for Ken Burns. The first item that shows up is the interview on the show "Q", from March 26. Good interview that discusses the documentary

shaz101

My goodness there are some stupid unfeeling comments happening.

I did a search and found it here.

http://video.pbs.org/program/story-cancer-emperor-all-maladies/ing 

I couldn't watch it as it was locked to your region, so again I did a search and found an app that acts as a virtual private network and I've just finished watching the first part. It was very emotional to watch. I'm so grateful and sadenned by all those poor kids who were used to test drugs. I'm so humbled by it all and so very grateful. I cried bucket loads. Andrew asked me if I should be watching it! But for me yes, it makes me feel so lucky that I have a great opportunity to beat this disease. 

Thanks, I'll listen to the podcast later today once I've recovered from the documentary xxx

neverthought

After long discussions with a friend who is a physician who questioned efficacy of chemo, I decided I had to do it anyway. I had two family members who died from BC after declining chemo. I still have doubts because my friend told me all of the long term risks from the chemo drugs. Some things it is better not to know.  I did decline the adriamycin and doubting myself about that.  Couldn't get a port placement and couldn't imagine living with a PIC line for months in my dominant arm (how would I flush it daily with my left hand?) and two different MO wouldn't even attempt the adriamycin via IV. 

I started to watch the Ken Burns "Emperor of All Maladies" but just couldn't watch it at this time. Normally something I would, but not right now.

Second TC infusion today with Neulasta tomorrow and hoping for the best.  Hope root canal and antibiotics have done their thing and won't cause any unexpected problems.

Thank you everyone for sharing. Can't imagine going through this and taking care of 4 children.  I am having a hard time even getting into work and staying all day.

Thank you Shaz101 for starting this thread and everyone for writing.  You are my heroes!

Dx  1/31/15, Stage I Grade 3, 3cm dcis + invasive + lobular 0/4 nodes, ER-/PR-/HER- 

Surgery  02/04/2015 Mastectomy (left)

Chemotherapy  03/11/2015 Cytoxan, Taxol

 

DavisD

feeling mowed down. Came home from work and couldn't get critters fed fast enough. Already in bed. Still have this cold/flu like thing going on. My head aches and my nose won't stop running. I want to rest now and watch the rest of the PBS Documentary on cancer tonight. Last night was especially touching to hear the story behind the clinical trial for herceptin to treat this woman's HER2 tumors. Mine is HER2+ and it made me more grateful for those who kept pushing and the women that agreed to be a part of this groundbreaking targeted therapy.

my lovely and loving relative kept asking by text if the chemo "make you sick and nauseous?" Almost sounded eager to hear the gory details.....my bad..I finally just texted back "yes" with no further explanation!! Ha. Still chuckling to myself about that one.

DavisD

my buddies

Trvler

Good for you, Diane! Love your dogs! Are you able to take anything for your head? I am having the nose/headache thing, too. Last night I took some tylenol and put some ice on my head. It's so hard to sleep when you have a sinus headache.

Neverthought: Good luck tomorrow. Good luck seems like kind of weird thing to say. I hope it is easy on you.

Trvler

There is a thread discussing the Ken Burns documentary if anyone is interested in reading more people's thoughts about it.

Jackbirdie

Joanna- so glad to hear you've been sprung. You must be almost home by now. Very good news.

Good luck to all having spa days today and tomorrow., or smooth sailing at least.

NinjaMary, so sorry about your mom. I haven't got the right words. I hope you can feel what's in my heart

Shaz- the rash is still huge, looks terrible, but I am getting some relief from otc hydrocortisone cream. The onc nurse is going to look at it tomorrow when I have my blood draw.

My neice is working like a dog. Cleaning, organizing, planting, weeding, and just in general being intelligent.

And speaking of dogs, Diane, yours are beautiful! Glad you have your buddies close by when not feeling well. I am sniffling my way through, burnt mouth, but otherwise SEs are receding (except the nasty rash).

I've read and enjoyed everyone's posts and cannot BELIEVE some of the stupid comments. I feel bad for all those on the receiving end. I'm making this short so I won't be too rude to my wonderful companion. She will be here till midday Friday.

Thinking of all of you and hoping you all have the easiest possible of evenings....xoxo

shaz101

Diane I'm sending some extra special I've your way

Katy, go and enjoy your company while she's here. We will (and have) been missing you, but your guest is more important x

I have a rash under both armpits. It was mild but now it looks similar to Katy's but nowhere near as big. I'm off to my GP I want to discuss all my options regarding the migraines. I had another one last night! 

Thinking of you all and thanking each one of you for everything! You all mean so much to me. 

m0mof2girls

I just found this group. I started chemo on March 17 and had my second dose today. I start with 8 weeks of AC, every other week and then move to Taxol once a week with Herceptin and Perjecta every 3rd treatment. I love what this group has to say and I'm thankful for the support.

dawnzdreams

I have been reading women's posts on here for years and I have maybe posted once or twice. I am not sure if I have posted since this new battle, but much of life has been a blur since my stage 4 diagnosis in August of 2013. I love all of your posts and have some great stories about people myself. Before I get into my "Red Devil" experience and BC story, I wanted to post to a couple of you.

@Jackiebird - WHen the cancer first broke the L4 in my spine, I started radiation. Shortly after that I had terrible pain on my right side. Considering I have a ton of tumors (up to 2.5 cm) in all five lobes of my lungs, they all sent me straight to the ER thinking I had a pulmonary embolism. The ER did tests and could not figure out what was wrong. I went and saw my oncologist the next day and, at first, she could not figure out what was causing the pain either. She decided to listed to my lungs and when she lifted up my shirt there was a rash, more towards my back on my side. She said, "Ahhh ha!" It was shingles! SHe explained that these cancer treatments can make us more susceptible to getting shingles if we have ever had the chicken pox. SHe loaded me up on shingles medicine and steroids and I felt much better in two days and was fine in about 2-3 weeks. She warned me that it can come back. It may not be what you have, but it is worth investigating since you are on treatment.

@The mom, I forget who is still raising kids, but you are not alone, I have 4 ages 11, 15, 21, and my oldest daughter who is no longer at home is 24 and expecting my first grand baby the end of July (a girl). My only son, though 21, has a cognitive disability from losing oxygen at birth and is more like about 15/16 mentally and emotionally. My husband died from esophageal cancer (9 days after my mom) in 2003, so I am the only parent my children have. They have some Aunts and things out of state they visit during the summer, but I have to fight as I am all they really have that they have a close bond with.

I started the Red Devil on March 11th. Two weeks after my port was placed. I have some nausea and my throat, esophagus, and stomach have that burning. I ran fevers for the first week, every night. Up to 102.7. The fevers have slowed down and I only get them once every 3 or so days now. No hair loss yet. Matter a fact, I was shocked when a neighbor (also stage 4 BC) called me today to see how I was and asked what medicine I was on. When I told her she asked about my hair. I had been through chemo and hair loss back in 2006, but for some reason I did not think I would lose my hair with this chemo. Then she said how Doxil was called the Red Devil which sent alarms through my memory banks as I remembered reading about it on this site. I was in such shock during my last doctor's appointment that I do not think I remember much of what she said about it and figured I better head back here to my trusty women! I would rather read about what it is actually like than some page full of "possible, common, and rare" side effects! Love all the venting, by the way! LOL My neighbor did give me some good advice on the throat (plus) burning...zantac 150. SHe said that took most of hers away when she was on Doxil, but she still had to drink cold stuff to help, which is funny because I have been drinking homemade milk shakes (cheaper and can have more - lots more, but the big bucket tub lol), which have helped me a lot!!! I have been up at 5 am making a milk shake. Oh, I have had a great deal of constipation, but I have been blaming it on the morphine I had to start taking again. Started about the same time, so hard to tell which is causing it.

~Port~MRI~ I doubt I will ever get used to this port. SOmetimes I forget it is there, but most of the time I know it is. My bra and seat belt bug it. Heavy shirts bug it. I was scared that out of the three veins they usually choose to plug them into that they would pick the juggler....they did! I have to try and stop being scared of things, every time I am scared about something it seems to happen. <sigh> It bothers me when I sleep and turn my head. My long time Fiance laughs about my hidden mic and the wire up my neck. But, on a brighter note, I am glad not to have my veins stuck for blood work and contrast anymore...or so I thought! lol I had to have an MRI as my cancer went from just being in my arm bone and L4 (which had a compression fracture) to my whole spine (with 4 bad spots and two more possible compression fractures), both hips, my collar bone, and two ribs...we needed the MRI on my left hip. which appeared ready to break on the scans and to check out the T10 and T11, which also appeared to be collapsed. The one thing I was happy about was that at least I had the port, so no troubles with finding veins. Ha! They were running late on MRIs and mine did not start until 4:45pm and the nurse who knew how to work with ports had left. Sure enough, another vein blown. Also, I was stuck in that machine for an hour and 45 minutes without warning! Everyone else was told 20-30 minutes and so I thought mine would maybe be 45 minutes since I knew I was having more. <sigh> Sorry to B%tch, but it still makes me mad. The late test caused my pain meds to wear off, I had a muscle cramp and could not move to fix it, and the head phones were squished in a bad spot on my head...all of which I figured I could deal with for just a few minutes. I had no idea how long I had been in that machine. Every time I thought I could not take it one more minute, I would push myself to take it longer. I kept thinking, "how much longer can it be? Certainly it must be over any minute!" Oh, boy! I did finally hit that button. Then the nurse came is and said, "a little drastic!" Geeez, When I got out of there and saw how long I had been in there, I wanted to choke someone. Here you have a stage 4 cancer patient with a broken back, pain meds worn off, flat hard table, muscle cramp, head phones pushing on my temples, and by then the machine was hot and I was hot flashing....and she said what????

~Things People Say~

1. One of my nieces had posted on Facebook, "I LOVE YOU AUNT DAWN!!" and this chick, who used to hit on my husband, said, "Did she pass?" OH! You jerk!!!! I just ignored it and posted back how I loved my niece. SOme how she had it removed. lol Then tried to post some nice message. lol

2. My little friend from when I was 8 years old (now almost 45), totally freaked me out! First she said that if I did not uproot my children and leave my man and my oldest pregnant daughter and move across the country to Oregon where there are "good" doctors, and homeopathic doctors, and organic food or, she said, she doubted I would live another few months. OMGosh!!! Then, if that was not bad enough...after not getting a reply I guess she thought I needed more, She told me she was having sympathy symptoms and taking on my cancer, because she would do anything for me, and her bone hurt, she feels nauseated, and her right breast hurt, and she may even have to go to the ER...and how this is no fun for her to be sick either, so I better hurry up and move. Double OMGosh!!!! That time I let into her...I told her first off, do not go taking any sympathy anything, I do not need this kinda cr@p right now. Second, I would eat organic, but I am a single mom and have to pay all my bills myself, feed three children, and suffering from huge winter bills, plus toilet paper and such in nice to have too. But, I informed her, we do have organic food here. Then I explained that I changed doctors three times to get the doctor I have now and I would not part with her for the world! And that we have good hospitals here, plus other great ones not too far away (I live very rural). And, if I decided I had the money and felt like anymore running that I am sure there is even a homeopathic doctor some place within an hour to 90 minute drive. Then I told her that only 22% of stage 4 make it 5 years, and I have made it 9,5 and, many only make it a couple months or so after the cancer hits the bone marrow and I have made it 5-6 now. And, since I have beat all odds and even my doctor will not give me an expiration date, who the heck does she think she is to try and place a time limit on me! And, if I were to uproot my kids from all of their friends and support and leave my oldest daughter, and my man of 9 years who has 58 acres and all his family here (like I could afford the move anyways) and leave all of my friends that I WOULD be dead in 8 weeks. How dare people??? Oh, but it gets worseShe told me she has been fighting off luekemia for me for over a year and never wanted to tell me. LOL I said, um, first, the cancer started in my left not right breast and I have NO cancer in either breast now (it never came back in my breast, I was a missed stage four...it came back in my kidney - now failed, my lungs, my spleen, my brain, my bones and now just took over my whole spine and my whole liver in the last 3 months....I did not need her cr@p)...So, I informed her that luekemia is funny, because I have blood work every month and all my counts have been fine up to starting this chemo!!! SInce I did not have the usual signs and that it was the left and not the right, she must be "picking up" on some other frriend! Do you know she had the nerve to message my oldest daughter on FB and tell her that I am stubborn and if I do not move I will be dead in two months? Of course she went on about thorganic and such too....my daughter was awesome! She told her how I do not have the $$ to move and maybe if she wanted to help so bad that she should uproot her life...plus all I said about my doctor and such too. After I heard she did that, I really jumped her about giving my kids some timeline!

I have some good ones about people saying not to take chemo! But, my neighbor stopped in, so I am gonna visit. I WILL post more. Together, we can survive The Red Devil! LOL

Big big ((((hugs))))

Dawn

dawnzdreams

m0mof2girls, I know what you mean. I ditto your thoughts. I have read through a number of threads/forums on breastcancer.org, but I was tickled to find this one on Red Devil and read through so many posts, with such great personalities that I can totally relate to right at this moment. So many of the things talked about on this thread fit right with so many of the same things that I have been going through, including the frustrations and "well meaning people." I have more on the whether or not to take chemo too. But, I will save that for another post.