Starting chemo July 2014
Comments
-
redheeledwomen St josephs?
0 -
Giles: don't even consider putting that video on youtube. Right now concentrate your energies on your treatment, then compile all your documentation and take it with the video to a lawyer. The NFB has lawyers that I'm sure will be glad to help you.
0 -
Giles, so happy to hear things are going better for you. I hope your new doctor treats you with the respect you deserve!
0 -
Also, PinkNinja...Love the fro! I think it's pretty cool you cheer others up with your groovy wigs! Making others happy tends to make oneself happy too!
0 -
Giles, so happy to hear about the doc change! Agree with Puffin, save it all for the lawyer after treatment is over. And I also wouldn't mention to anyone at the new doc's about plans to sue. He may be super nice, but they have a professional connection and you wouldn't want to have a lawsuit preempted.
0 -
Giles, I second everyone's advice about the video and I'd like to add: don't complain about your old doctor to your new one. Just tell him what you need and why and leave everything else out. It can make things really stressful if he has a personal/professional relationship with the old doctor. Not to mention the new doc has absolutely no role whatsoever in resolving anything or making you whole, so there's really no reason to anyway
0 -
Good News at last Gilesmt. It is long in coming, but should make it much easier to deal with.
. I'm somewhat better this afternoon. Yesterday I had a great affinity to my pillow Today, I actually made it up and down the stairs twice. It seems #3 was a bear for most of us and I hate to say #4 has not been an improvement. My MO said the I would be more physically tired and she was 100%. My brain seems tired too. It really doesn't want to think. It wants to veg. It's really weird. And I'm trying to avoid all the drugs that affect mental acuity.
I think tomorrow I'm going to send a post without going back and correcting the missed keystrokes.
0 -
Quick update - I'm too drugged to type more.
I am still in the hospital (going in day 12) and don't know when I will be released yet.I had another operation today to clean out the wounds and look beneath blisters/rash that developed on Fri. The procedure was supposed to take 45 min, but took 2 hours and 45 mins. I came out in excruciating pain because the surgeon remove dead muscle which she is sending for a biopsy.
So at this point they are not sure if this was an infection. Nothing ever grew on any of the cultures. There a lot of theories (allergic reaction, auto-immune response, combo of stuff) but no answers. Hoping that I'll have some answers soon.
My next chemo (#4) was supposed to be tmrw (wed 9/17)....its of course postponed...but am still supposed to get Herceptin.
0 -
jennlize, in my prayers.
0 -
wow, a lot has happened here since I've been away!!
First things first - Jennliza, omg. I can't believe they don't know what it is. Thinking of you - must be super frustrating. Having spent a week in hospital with infection in August, I remember how miserable. Can't imagine 12 days and no resolution to what's happening. Gigantic hug from across the country.
Second - Giles, hurrah! This is great news, very happy things are moving in the right direction. Agree w JennKay above.
About a million others to respond to (JennKay - I get it - also fiercly independent, I haven't successfully managed to ask for help either...too proud maybe? Don't like to show I need it?...Pink - heart the wigs! Coyote - hope it gets better. Mumford - don't leave us...) but I can't keep them all straight :-(
Round 3 has been pretty rough. I've absolutely seen cumulative SEs - and not the GI ones or the ones I expected (I've mostly worked out the drugs for those). Fatigue's been really hard this round...and insomnia!! Wth? How does this happen?? Can't sleep at night, exhausted all day. Even WITH Benadryl (used to knock me out) or Ativan, haven't slept through the night in 2 weeks. Argh!!
Stupid rash I get every round is worse too..bloody holes all over my body. Itches in an awful way too :-(
Then a bunch of weird ones - thank you to whoever gave the cracked corners of mouth a name...I thought that was just me, had no idea it was A Thing. Somewhat relieved..
Anyone else have swollen, itchy eyes? Might just be from constant wiping from dripping, but the itchiness is driving me nuts...
Ok, I'm done complaining. It's all small stuff anyhow (relative to the problems others are facing). Man, I am looking forward to being done with it though...
Lots of love to my July sisters, and sorry about slightly rambling post...stupid chemo brain all over the place...
0 -
Giles And Pinkninja horray uhuuu😊👏🙏
Very good news!!
Jennliza good to hear from you we are all praying for you ! Big hugs to you !
Chemo brain is here also insomnia and bluer vision itchy and watery eye .. My nose is bledim with lots of blisters inside so painful !
Well hope everyone can get better to the end of the week
XO
0 -
ladyb, my throat burned so bad that I couldn't drink anything and I got dehydrated twice. This is TMI and gross but one night is what so nad and the acid was burning my throat and I couldn't swallow my spit so I spit in a paper towel! Mine was bad! Full, tight stomach that hurt too. I ate the brat diet for awhile (bananas, rice, applesause and toast) and ate very small meals and nothing spicy. Don't lay down after you eat for at least 2 hours
0 -
Hi, all.
Just checking in. I got tattooed this week in prep for radiation. 4 tiny dots (one is not so tiny, the other 3 are barely visible -- it was a student, so what the heck. They have to learn somehow.) The simulation thing doesn't take very long...they position you on a CT scanner bed, wiggle you around a bit until you're lined up properly, then scan for about 8 minutes with a bunch of bb stickers on. Once they're happy with that, they replace the stickers with actual tattoos. It just feels like a tiny needle stick. No biggie.
I start radiation on Monday and I'll keep you all posted on how that goes.
I can't tell you how helpless I feel now that I'm hearing about round 4 SE's and the upcoming round 4 for some of you. Please rest, rest, rest. Each day I feel better and look back thinking how rough some days were. You will all be there soon...
I'm off to book a trip to sunny Florida for the beginning of December...it will be something to look forward to after treatment is done.
Happy Wednesday, everyone.
0 -
Hi all...thought I'd weigh in about the rashes. I also get the rash, but discovered mid 2nd treatment that Hydro-Cortisone cream worked at curing it. For treatment 3, I put it onto forehead/face as soon as I saw one pimple/rash pop up and....although I am in the hospital for 12days....I didn't get a rash on my forehead/face...:it did come out on neck....bit then applied one cream there and it went away.
You can buy hydro-cortisone cream over the counter!!
0 -
Keep Jennliza in your prayers, she is still in the hospital. I'm awaiting her answer, to my question of, may I post your pm to me. Leaving for 'the chair' in less than 1 hour.
0 -
JennLiza -- thanks for the update! Hope you find some answers soon. Hang in there; you must be weary from your ordeal.
Mumford -- yes, keep us up-to-date on your radiation! That's something in my future as well.
Giles -- glad to her you have a new MO! Woo hoo!
Wednesday transfusion ladies -- I'm sitting in the chair now, waiting for my Taxol, Perjeta, and Herceptin cocktail. Hope you all have good days! I had a good visit with MO; my heart scan looked good and it's getting really hard to feel my tumor at all. Only black cloud -- Insurance company is still refusing to pay for my genetic testing..... Grrrr....
0 -
Massive headache this morning. Strange dreams, but at least I know I slept. I too had a time of insomnia after #3. The thing with the drippy eyes is because some of the chemo drugs mess with the tear ducts. MO said some have it so bad they have an ophthalmologist place stents in the tear ducts. Thankfully mine is not that bad. Crusty in the mornings. I've developed a sore on the inside of my nostril just at the tip. Annoying.
Jennliza, I have been keeping you in my prayers, as have DH and my cousin who is an awesome prayer warrior. I have also passed on a request to the ladies on a thread of Christian ladies over 60 here and they are also praying for you. We are storming heaven on your behalf. Thank you for taking the time to check in.
Mumford, glad you're hanging around. We will experience post chemo vicariously through you.
Those with acid issues, this is not a fix, but you can relieve a bit of the burning throat with some baking soda in water.
ElaineTherese, I don't know if I asked, where are you getting infusions?
0 -
I DO NOT INTEND TO DO ANYTHING WITH THE VIDEO UNTIL LATER, I SAID THAT WHEN I WROTE ABOUT IT, I SAID I JUST NEED TO HANDLE THIS CHEMO AND CANCER THEN I WILL DO SOMETHING.
I will not tell anything about the doctor until the new MO ask questions and it is always my personal experience not to lie, especially about your health. When the new MO ask me about SE, like I am sure he will I will tell him I have diarrhea for 5 weeks, if he asks me what I did I will tell him, if he ask me what my old MO did I will not lie she was told many times in 30 days and at the end she told me to cut down on immodium and that is all she said. If he asks anymore I will have to answer, she never returned phone calls, her nurses never returned phone calls, her SW had a note to call me on July 23, but did not return the phone call until sept 5,. I will tell him what happened in urgent care, if he asks that they refused me food, water and meds for 7 hours, leading to higher fever. Because that is the care I got, it the truth. Will I blame it on the old MO, no, but I do not think it is in my best medical option to go in and lie. If he does not ask, I won't tell, but then again if he does not ask what it has been like, what SE I have had, what hospital stays I have had, than I can't think he is any good either, because any real professional doctor should be asking these questions. Will I start the conversation that I plan to sue, no, will I start the conversation that I hate my MO, or that my MO is an idiot without a brain no. Those are my opinions and I will keep them to myself. But if ask what my care to SE and hospital stays have been there is no way I am going to lie and say I recieved care I did not receive, or that they were handle in a stardard of care they should have been, or that they treated me with respect and dignity.
Thanks to all those who gave support.
0 -
Good Morning from Nevada. I can tell this will be an improving day. The big goal of the day for me is to control "d" and get enough fluid in to stop the dehydration. I think I'm always a quart low. I think that is why I am dizzy when I stand up. You know, I knew the answer to that, but I honestly can't remember it. It's that chemo brain thing again. Hubby asks me what am I suppose to be doing about x-y-z and I can only look at him. Is this what Alzheimer's is like? Scary.Really glad to hear from you Jennliza. I'm sorry that things are still so very hard and that no clear answer is established. It seems like a slow process, but that answers may be developing. My heart and prayers go out to you. There is no doubt that Chemo is not for wimps.
Chaosrain: I hope you are doing well with the changes in your program. We are here for you.
Mumford: The radiation info is interesting. I'll be headed that direction too. Did not know there are tats in my future. I knew pretty much what to expect with the chemo because I had done this part of it before. Radiation will be new territory for me. I'm hoping to get through that before the first of 2015. I've already been through the reconstruction part of this. I did the expander / silicone implant procedure during my first round of chemo treatments. I'm so glad that I don't have to do that now. I've been told by the RO that the implants should be okay with the radiation, but I the grapevine says there can be issues. My PS said he will want to see me after the radiation is complete. Magic word - "complete".
0 -
Coyote, so glad to hear you're on the upswing. Take your lomotil or Imodium like a good girl and drink drink drink. I love my SodaStream so much for that. I don't think this is like Alzheimer's as much as it is like dementia. At least you know who your husband is, right?
I will be seeing the RO next Wednesday for initial consult, that will be day two of round 5. MO wants to have me done with rads by end of year so we don't run into massive deductible outlays, for which DH & I are grateful.
0 -
Coyote -- it's always nice to be on the upswing! Just feeling "more normal" is a sign of hope of better days ahead.
Mags -- I'm getting my infusions here in Norman at Mercy Oncology. It's very convenient; it's just across the street from Norman Regional Hospital (where I'll get my surgery and radiation), and just down the hall from an office that performs PET scans. It's also convenient for the people who sign up to take me home from chemo (if needed).
Today is going a little slow because they're watching me for reactions to my new meds, Perjeta, Herceptin, and Taxol. Alas, the Benadryl infusion did not put me to sleep. Must be counteracted by the steroids, which have the opposite effect.
Best wishes for gentle SEs for all!
0 -
Jenniliza,
I am usually on the Christian thread but I have been praying for you as Mags has posted on the Christian thread. I didn't want to offend anyone on this thread but Mags sort of gave the invitation to post here so I am. I am so sorry for all that you have been through. The cancer journey is already tough enough and you have really gone that extra mile whether you wanted to or not. I am praying for the doctor's wisdom and that they will be able to control your pain and find the source of your problem. Not only is this very tough on you but I am sure your family is having a tough time as well so I will be praying for them also. I know when you are in a very dark tunnel and you can't see the light it can be very hard indeed. I am praying that you will start to see the light at the end of this tunnel and that one of these days you will be looking at cancer in the rear view mirror. I know that seems like it will never happen but it will. Hang in there. Many will be praying for you.
Love,
Nancy
0 -
Had to use soap to get my ring off last night and my socks are leaving dents in my legs from the swelling. I called onc this morning, regarding being puffy before even starting my dexamethasone and getting short of breath just bending over to tie my shoes. Onc is out of the office, PA is OK with that. Went in and got my lab drawn, just checked it online and everything is within an acceptable range for tomorrow's chemo, #4, last one.
Jennliza: keeping you in my prayers
Mumford: we need you at the finish line cheering us on. Have you checked out the Fall Rads discussion forum?
Wishing for gentle SE's for everyone this round.
0 -
Puffin (Puffy?), I'm delighted that you will be over the finish line tomorrow. Ring the hell out of that bell!!! I haven't checked out the radiation thread...it's kinda like you guys are my classmates and I don't want to change classes or schools, so I'm just going to hang here, if that's alright with everyone.
This afternoon I attended the first class of a program called The Healing Journey. There are several parts (part 1 is 4 weeks long). The premise it that we can positively affect our outcomes by actively participating in our healing (combined with medicine, of course). There have been interesting studies showing positive results. If nothing else, it teaches strategies for relaxation, meditation, being more grounded, etc. It's a Canadian thing, but the website is good and I understand most (if not all) of the materials are available via the website: http://www.healingjourney.ca/ Check it out...it might be helpful.
Coyote, I'm glad you're coming around.
0 -
praying for you jenliza.
knmtwins, I always get emend in my pre chemo cocktail, definitely ask for it.
I just got home a little while ago from #4 too and am waiting to see what happens
what is the Christian thread you guys are on?
0 -
pinkninja -- we are chemo buddies; I just got home from chemo, too. So far, I feel less spacey on Taxol, Perjeta and Herceptin than I ever did on AC. This could be just the steroid high, which usually wears off on Friday. But, for sure, I had no reactions to any of the meds., just sat there with my laptop and worked. For the first time, I actually got a lot of work done at chemo -- I wrote midterm study questions, two quizzes, a letter of recommendation, and a source list.
Hope all the other ladies had OK days in the chair!
0 -
I'm right with Puffin on the fluid retention. After 4th chemo, I can't wear rings, my feet and ankles are now cankles and I just got back to work after sneaking out to buy bigger pants. While trying on, I got so winded, I had to stop and catch my breath several times. My arm muscles were burning from pulling on pants as though I was having a major workout. What a wimp! I have two more chemos to go and am worried about how much more weight gain I'll have. Other than that, just dripping eyes, bloody nose, charred feet - BUT NO NAUSEA SO I CAN DO THIS!!!!
Wishing you all well and only side effects that you can handle.
0 -
Pink, here's a link to the thread: https://community.breastcancer.org/forum/104/topi...
That will take you to the last page. Ladyb1234 is there with us as well.
0 -
has anyone found anything helpful to do about the dripping eyes??
This has gotten much worse for me over past week or so and today I have just streaming eyes constantly. A colleague asked if I am ok...
I have a pretty good medicine cabinet but am totally stumped on this one...driving me nuts now!
(Also had to give up wearing my wedding rings...makes me sad to look at my hands)
Thanks for any ideas!!
Rain (oddly apt right now...)
0 -
Mumford: I wasn't planning on ringing the bell until I was done with radiation? You can be a member of the Fall Rads group without deserting this group!
Blownaway: I'm there with you, never knew getting dressed took so much energy!
0
