Starting Chemo January 6, 2014
Comments
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Hi - I too am working. My work has been flexible. I just get tired and have to pace myself.
I'd like to vent here if it's ok - I'm not quite sure what to do. I posted this over in insurance billing mistakes. I was told today to transfer oncology services.
I've been having issues with the oncology place with delay in submitting tests, scheduling and insurance (just one example is that they billed my dad's old insurance - I have no idea how they got the number. I'm 30 years old with my own insurance number!) so much to the point that I sent a letter objectively outlining my concerns with the practice. I received a phone call today from the office manager - first words out of her mouth were I'm so and so, I received your letter, and I think you should transfer services. She then invalidated me and all of my concerns stating that they were accommodating to me when I'm the one with the insurance issues, and they were kind enough to work with me on it. She pretty much implied that I was a troublemaker, and my concerns were unfounded. She wanted to argue point by point in my letter which I did not want to do on the phone. I just wanted to provide them an outline of my concern and move forward. She beat me up verbally pretty good today. It was the most stressful phone call and thing I've had to deal with. I'm not even sure what to do. What would it mean to switch oncologists and chemo mid-treatment? OR should I just duck my head and go in for treatment. I feel so dis-empowered.
Just general customer service says to listen to the customer's complaint. I'm just flabbergasted. I was not disrespectful. I did not say mean or hateful things. I just wanted to provide them feedback. I'm really shocked. I deal with a lot of client feedback in the field I work. I deal with CRAZY complaints all the time. I would have NEVER spoke with anyone this way. Actually, if I heard any of my staff speaking this way, I would have fired them on the spot or suspended them.
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hi all. Paloverde that's a bummer about emend, the insurance system in Australia works a little differently. The treatment provided by the oncology clinic is a package and the insurer has no control over the prescribed medications etc, so the oncologists are able to provide the best treatment. I believe the public system has no constraints either due to the Australian Medicare system which provides free healthcare to all. It must make treatment difficult when there are financial considerations!
Just a quick poll here.....how many of this group have a port?
LIL
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Hi all, Poloverde my next chemo is Thursday and Neulasta is Friday. I plan to take the claritin starting tomorrow and see how it goes. This week was much better, though now I realize how really bad I felt, lol. My college friend is going with me this time and I am looking forward to another adventure together. My only issue is my blood sugar. Now that my invokanna has worn off completely I am battling high blood sugars again. I am getting ready to request some Actos from my Endocrinologist. I hope she feels helpful tomorrow. Good luck to all the Thursday girls.
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momgie-
I'm getting the same treatment as you, TC 4x. I had my first treatment January 8 th and I can tell you it's been no picnic here either!! Feel like I have the flu?! Coughing fever just feeling like crap!! They put me on an antibiotic thinking it may be a infection but it is whipping my butt!! As far as the nuelasta shot, a whole new set of pain. I took the Claritin the day before the day of and was going to take it the day after and forgot. That won't happen again, I will remember to take it and may try a couple days after. The lower back pain started Sunday night (the shot was Friday). I had a hard time sleeping, sitting and bending down. My mouth feels like sand paper, anyone have a tip on that? My head feels like a soaked tennis ball, feel swollen from the steroids and sweating/hot all the time, ugh I truly didn't think I'd have this many SE. I thought I'd be able to work through this but so far I worked the Thursday after treatment and off since then. I own a retail store and I "outed" myself prior to my BMX because I would be out for several weeks and my customers would notice. I'm not so worried about losing my hair except for my 6 yr old. Like you lisacm, I don't want him embarrassed or anyone pointing my cancer out to him. I've been very vague as far as my condition with him and don't want the bald head to frighten him. My husband and I disagree in our approach with the explanation. I believe in telling him about the disease and saying the word to him so he doesn't hear it from someone else. My husband believes we can "skate by" with little information or explanation. ??? I just don't know. Feeling worn down, not just from the chemo. I was in a safe place mentally through all this I called it my project mode. I took this on like a project, gathered my information decided on a game plan and forged on but wow, having a tough time now. Maybe time to talk to someone. Anyway, good luck to everyone and thanks so much for being here to listen and for your help! We all need to stick together!! Hugs!
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Nancy, for your mouth. First of all, make sure to stay hydrated. They will tell you to drink water, but as long as you're drinking decafeinated beverages it will still hydrate you. I found I enjoyed the blue Gatorade. I would freeze them half way, then shake them up so they were slushy.
Chemo makes you vulnerable to thrush and mouth sores. To prevent thrush either take acidophilus or eat a yogurt everyday. To prevent mouth sores mix a quart of water with 1 TBS of salt and 1 TBS of baking soda. Several times a day swish it in your mouth for 10-30 seconds, then spit it out. It works wonders.
Paula
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Paula, thanks I'll start with the salt/baking soda tomorrow. I'm drinking so much every day I feel like ill float away.
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hey nancyjeane, sorry to hear you are having a hard time with chemo. As for the dry mouth, I have been using the water/salt/bicarbonate rinse from day 1 and my mouth feels fine. It was one of the side effects I was worried about so I decided on prevention rather than cure. I make up the wash in the morning and use it after eating. I am so using biotene dry mouth toothpaste on a very soft toothbrush. I don't know if you have this product in the states but I'm sure there would be something similar.
LIL
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nancyjeanne- I am so sorry you are having to go through all of this. We have some similar issues. I wrote how we are handling things below in hopes it may give you some ideas. Everyone is different and there is never a one size fits all choice but this is what works for me/us...
I'm in the states and agree with LIL... I love my biotene. I use the salt/baking soda. Then I use biotene toothpaste on a child's brush (it's very soft) and rinse with biotene mouth wash. I also use biotene gum if I need to during the day.
I was the same way as you after my initial diagnosis - very project like. It felt like it was all happening to some one else. I had surgery 4 weeks after diagnosis (now in chemo) About 3 weeks after surgery it "hit" me. These are all grieving stages. I think every stage is good to go through ( sometimes more than once). But don't be afraid to seek someone to talk to. This is a huge thing we are going through. Talk to your MO too. Maybe they can guide you in the right direction.
I also have 3 children (9,5,2). We have chosen to be as open about my diagnosis as we can without being scary about it. It helped that I told them that they couldn't "catch" it from me and that they did not do anything to cause me to have it. My 9 year old is struggling with some anger issues regarding my cancer and my 5 year old is having separation anxiety. Here in Texas there is a group called Wonders and Worries. They offer free counseling for children whose parents have cancer. I just talked to them this week and will be utilizing their services to help give my children the tools the need to get through this time.
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nancyjeanne1967 -
I have had the same dilemma over how much to tell my kids. I was pretty straight with my 10-year-old and he's handling everything okay. My 8-year-old was another story. I asked him if he had ever heard of cancer before and he said no, so I just explained that I needed strong medicine and an operation to get better. I told my kids' teachers what was going on, and one of them called me to let me know the 8-year-old had been crying in class because he doesn't want me to lose my hair (he's seen the bald kids in the St. Jude commercials). The teacher had him talk to the school counselor and things are much better now. His teacher also set up special "lunch dates" for just the two of them, so he can talk about anything he wants. Maybe your child's school has a resource like that? I've promised my kids I'll cover up my head when I pick them up at school - that seems to be a a huge deal with little kids.
My first AC is on Thursday, ladies, wish me luck :-)
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This part of it (bc) is where it gets me! My kids, I've been totally straight forward with my oldest, he's 20 and obviously understands but my 6 yr old.......sigh it's killing me. That's when I cry. I didn't cry when I got the news but I really need to see someone because I know it's eating me up inside. I'm babbling now sorry. Hope today is better. Thanks for your support.
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My daughter is older, almost 16, and whenever she found out about something we delayed telling her, she was not happy with us.
Even when the docs got that shocker of an 11 positive nodes result (from a little 1.5 cm tumor) and scanned me to bits to make sure I hadn't gone to Stage IV already. After we got the results (relief) 4 days later, we shared the whole story, but not before. She was offended by our delay and asked us point blank if there was anything else we hadn't shared. We explained that we hadn't wanted her to be as scared as we were, but she wasn't having any of it. So we learned. Trial and error.
Sounds like all of you are making your best decisions as you're able to at the time. You can always make a course correction or get that professional support as you've described.
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Diamondlil, that's similar here as far as what's administered at the hospital/center. But my prescription provider is owned by a retail chain, CVS, so for anything you self-administer, they dictate that you fill it at one of their retail pharmacies. So then they apply whatever prescription coverage exclusions they've defined. Also, they won't let the hospital pharmacy fill any scrip that the retail pharmacy is capable of filling - that was my first clue that something was going to go wrong for the Emend. I've never liked that chain in the first place, and the whole thing seems like a big stupid conflict of interest to me. Oh well ... onward.
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I have Caremark/CVS they would not let the clinic administer the neulasta shot. they shipped to my home and I inject it. It is actually okay for me since I am a diabetic and inject on a daily basis. I saved me a 2 hour round trip to the clinic.
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Nancyjeanne--like Palo, I have found the direct approach works best with my kids--but each child is different. I actually told my kids' school counsellors the day we told them so they would know to look for changes in their behaviour, signs of depression, etc. Our oldest 16 yo daughter has a history of OCD/anxiety issues and we were very worried about how she would handle it. As it turns out, as long as we keep her in the loop as soon as we find out things, she does ok. She even wanted to look at my scar(mastectomy without recon), that shocked me, but ok. I hope today is a better day for you.
Am I the only one that is more concerned about the se's from the drugs they give you to counter the se's from the chemo than the actually chemo? Steroids scare me due to past problems, but tomorrow is the big day. I'm sporting a brand new pixie cut for the occasion!!
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One of the hardest parts of this whole experience has been telling my 4 year old. She's been asking us the last couple of days if anyone can catch my BC. She also asked me when chemo was going to start....these are not things that a 4 year old should even know about, right? It makes me sad, heartbroken really that she has to worry about any of this.
BTW, it's starting to look more and more like I might not be having chemo on 1/23. No one wants to touch me while I'm on IV antibiotics and still have a drain in. Still trying to find out about this anemia thing too, waiting for MO to call back and let me know if there is a defiency of something. *sigh*
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Tang--you still have that blasted drain? Is it even close to slowing up enough to come out? The nurse pract. for the bs pulled mine last week because it was clogged, and now my chest is "growing" and has "sloshing" waves of fluid when I walk. I am wondering if they will put off my chemo when the mo sees the seromas. Do you have a history of anemia? I have to take iron monthly with my cycle or mine drops to 10.
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Sam2U-I have one drain left, it was one that was put in on 12/19 and it was a 2nd surgery. I'm so OVER it!
I had that sloshing feeling when my last drain came out, but it stopped after a couple of days. I was worried about seroma, but it was okay. I don't have a history of anemia, that I know of. I'm not sure if MO will do chemo with seroma going on. My BS nurse told me that the MO likely wouldn't want to do chemo while the drain was still in, which I hadn't even thought of. My drain output is still around 60 over a 24hr period. I will wake up and there is about 40ish in the drain and then at the end of the day its about 20.
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regarding telling kids about BC. My daughters teacher had BC last year and she sent a note home to the parents letting us know so that we could discuss it with the kids. We talked to my daughter about it and explained what it meant. The teacher returned to school in September and looks fabulous! When, I explained to my daughter about my BC, I told her that I have the same thing mrs. d had and now she is back to school and doing well and I will be too. I just have to get treatment first and the treatment can make me sick while I'm going through it. We are really open about it. You have to know your child. I know mine is very perceptive and if I was sick all the time and I didn't prepare her, she would be scared. My husband is supportive for the most part, but then he says something stupid and I get pissed. Today I did a little PSA on facebook. Nothing maudlin, just a hey if I can get it, you can too so check your breasts and get your mammos. Well, he texted me that he was hearing thru the grapevine about my fb post and he thought we weren't living this thru social networking. Made me feel stupid for posting. I felt like I did a public service. I know many young women just like me who have the potential to get cancer just like me and who thought they were safe just like I did. Times like this, I wish I was single. Lol
Oh and three of my friends scheduled mammograms today!
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Lisacm--husbands can be stupid sometimes :lol. Glad that your friends scheduled mammos!!
Tang--mine is still sloshing 10 days after drain removal--but hey at least the farting sound when I raise my arm has gone away--nothing like making unintentional noises when you move. I hope the fluid dries up soon!!
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morning ladies, my surgeon doesn't like to leave drains in longer than 7 days, so mine were removed even though I still had around 80 ml/day output. Of course I developed seromas and was having them drained twice a week for about a month. I still have some fluid but it is definatly reduced. The thinking is that while the drain is insitu the fluid does not need to find its own "way". The presence of seromas did not delay my chemo.
As to telling children about my BCD, all the evidence suggests that you should tell them immediately with age appropriate terminology. my kids are 15 and 16 and we're told everything straight away.
It's another beautiful day here.....I think I'll take a walk along the beach! I need to enjoy this time off before work next week.
LIL
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Sam2u-haha on the farting sound...I had that too!
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Hi Ladies
I guess it's time for me to introduce myself. I'm Wendy, 48 (but feel 23 still) living in San Diego with my hubby, 15 year old daughter and 8 year old son. I also started chemo this month. Jan 6th for 4 rounds of AC. I had my port-a-cath implanted the morning of my first chemo back in Apr '13 and I have to say I'm so glad I did it has made all the infusions, blood draws, etc so much easier. Especially helped with my MUGA scan ~ those IVs can hurt!
I was originally dxd with triple neg st2 invasive ductal carcinoma L br in Jan of 2013. It was found during a routine mammo. They called me back for an ultrasound and needle core biopsy. I had a lumpectomy in Feb, no lymph node involvement. Started a clinical trial of Cytoxan and Taxotere in April for 6 cycles, 3 weeks apart. I felt like I had kicked this cancer's ASS! I lost my hair and my eyebrows (the eyebrows were the worst part!) gained 10lbs from the steroids, but I felt GOOD!
I was at my double mastectomy pre-op appt with my surgeon and plastic surgeon to get all that pre surgery junk out of the way and mentioned that I had this nagging, unrelenting back pain that wasn't responding as expected to chiro, PT and massage. They poo-pooed me and said awww you're just anxious. I said I'm not anxious! I'm thrilled to be getting on with my life and having new perky healthy boobs! I insisted on an mri and 2 days later was given the bad news ~ St IV breast cancer had metastasized to my T4 spine. The worst part was waiting on the PET scan results. The tumor in my spine was the only spot they found. I don't think I've ever felt such relief.
I had 10 rads in Nov 2013 and started my second fight with chemo last Monday. My worst day was day 6, but by day 8 I was up, showered, and driving my kids to school. I even shopped! Go me. I did lose 8 or so pounds but I do love to eat so that won't last long!
So, not meaning to hijack this thread, just taking some time to post a little about me and join you ladies in fighting this with everything I've got. I'm really glad to have found this site.
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hi carpevinum, what an intense 12 months you have had. You must be so pleased you pushed for that MRI! So they didn't do any cts etc on initial diagnosis? As to losing weight on chemo....... I don't think there's any chance of that happening to me, I can't stop eating!
LIL
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Hello to all the new ladies!
Octeb, I'm on the FEC-D protocol as well. Got my first one Jan. 10th, and the last few days have been a blur. The chemo fog is getting better and the blurred vision is finally lifting. I live in TO as well; FEC-D seems to be popular here. As for work, apparently some people are able to do work while going through chemo...I commend those women, and I have no idea how they do it. There is no way that I can be a functional ICU RN during my chemo. I will be staying off work for at least one year according to my MO. All the best luck to you and feel free to ask questions you have. -
I have a portacath and no one is using it except for chemo. I went for a muga before chemo and they used my arm. yep it did hurt and left quite a bruise. they take my weekly blood draw out of my arms too. Any ideas ladies?
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Hi Lil
Nope no CTs on initial dx because my nodes were clear! I asked the same question and that was the answer. Not sure if the fact that I'm being treated at a military treatment facility plays into that......
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Tekwriter ~ when I went for my MUGA I had to stop by oncology first so that my port could be accessed. It can only be done by qualified personnel. The phleb at the MUGA couldn't even remove it when they were done ~ I had to return to onc. Maybe that's why they used your arm? I would definitely complain about that and see what their policy is. ouchie.
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Desimone ~ you're from Delta?? I'm from North Van
Living in San Diego. I miss BC. Well, I miss my friends and family and the beauty of Vancouver etc but nope don't miss the rain.
We're chemo twins I started Jan 6th also.
You can do it. This is my second time. You'll feel as rotten as you've ever felt in your life and then one morning you'll wake up and go *hey! I'm feeling better today!* For me, days 6 and 7 are THE WORST and then by day 8 I'm up bossing around the hubby and taking the kids to school. And shopping. Shoes. Bags. Makeup. Starbucks..... *flees*
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calmandstrong, why off work for a year? (ICU RN would surely be a huge challenge) How long will your chemo course be?
Tang and Sam - Seroma farts, oh my gosh! I laughed for about 5 minutes. That's one of those jokes that the men would never be able to appreciate, or want to.
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That's what my MO told me..prepare for one year off. Chemo is 6 cycles, once every three weeks....total of 4 months. Then followed by radiation. Plus the recovery time in between. I can't even imagine going to work right now!
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