April 2013 Chemo Group
Comments
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Please be careful about not going to the ER.. if you are having these fevers/chills approximately 8-10 days after your treatment that is your "nadir" point where your blood counts are at the lowest. I had to have antibiotics immediately.
Call the on-call onc or chemo nurse first, mine sent down info to the ER before I showed up so they knew it was chemo related and were ready for me.
http://en.wikipedia.org/wiki/Febrile_neutropenia
http://en.wikipedia.org/wiki/Neutropenia -
Carol: I'm in agreement with most - say nothing during job interviews. Really not relevant at this point.
Indenial: I'm fortunate that my MO has "my chart", a secure on line system to communicate. So far they've answered emails w/in 2 hours (except on weekends). i've also had the bloody nose. Be sure to call if you're concerned.
RockerMom: The ends of my fingers were burning before tx#3 on Wednesday. Now they are numb & cracking again - particularly right hand. I'm using vaseline w/white gloves at night for the cracking skin.
Interesting changes. Tx & Neulasta #2 - the bone pain wasn't as bad as #1. I thought the Claritin had solved the problem. It's back this time w/tx & Neulasta #3. I guess that will teach me to try to figure out what's up next.
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Katie, just wanted to say Hi and I will be thinking of you as we both get our last treatment today. I thought this day would never come. I hope we have minimal side effects this round. Take care.
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Ring that bell loud Jen & Katie!
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Jen and Katie,
Congrats on your last treatment.
Our place doesn't have a bell! It was a bit sad when the "old man" there had no special way to mark his final treatment.
Pat -
I don't think my place has a bell either but if it did I'd ring it loudly. I envy everyone else who have great relationships with their nurses and fellow chemo patients. No one really talks to anyone where I go. Most are elderly ladies, I feel like a baby there. Heck one lady getting an infusion brought her daughter with her, the daughter used a walker. The poor woman was probably in her late 80's or early 90's. So sad that she was having to go through that.
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Good morning ladies!!
Just wanted to weigh in on a couple of issues that have come up these past days.
I am in a hiring position with my company and you should not disclose your medical condition during the interview, even if you are asked. Once you are hired, you can make a more informed decision about revealing your condition since you will then understand better policies and procedures and have a relationship with your new boss. In my situation, as a key employee, the contract I signed stated that I was required to disclose any life-threatening illness and would be subject to possible termination should I have a life-threatening illness. I have advised very few individuals about my illness and prognosis, but my boss, the company owner and my team members were among them. They have been wonderful - couldn't ask for better support at work. I was fully prepared to be fired, though it did not happen. There are rules in the ADA that you cannot be fired for having cancer, however you must be able to perform your job with reasonable accomodation.
Bloody nose!!! I thought I was the only one with a non-stop dripping and bloody nose. It is better today, but this past weekend, I blew my nose so much it is sore. I am also having trouble with my left eye weeping constantly. My right eye is perfectly normal...and I have been slobbering a lot. What the heck is that??? Could that be part of mouth sores...even if I don't have mouth sores??
As far as thanking people for helping us, I have a couple of things I do. For all the churches who have been praying for me and sending me prayer cards, I make a donation to the church and send a note to let them know how much I appreciate their caring. If you can't afford a monetary donation, a letter of THANK YOU lets them know that their thoughts and prayers make a difference. For my local friends who are constantly helping me, I make sure that I can take them to lunch, or when I am feeling well, I make them some goodies, if I know that they like goodies and can have them. What can I say about my children??? The comfort they bring my DH and I is immeasurable. Our plan is to have a family clelebration once my chemo and rads are done with a great trip to a wonderful destination. Cant wait. Mostly. a heartfelt THANK YOU is all you need to do and even when it is sent to an organization that seems anonymous. You'd be surprised how delighted volunteers are to know that they are appreciated.
Next week is my 4th TC treatment...then I have two more. After each of the next 3 treatments, we will have guests coming. Daughter's family in June, Son's family in July and my two sisters in August. I am a little concerned about feeling well enough for company. But, I think having guests will give me something to look forward to and might brighten up these last three treatments a bit.
I wish you all wonderful, side-effect free days ahead!
Sandra
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Morning all! Found out today, they are in a rush to start Taxol/Herceptin, so starting Friday. I have LOVED my almost 3 weeks off, but I know I must go in for the drip, LOL. I am SO scared to start Taxol, I am so focused on reading it can cause black nails/your nails to fall off! YUCK! I am in nursing, so my hands are sacred so to speak. THAT I could not hide. I also get another MRI Friday to see if the cancer has shrunk, God willing!
Right now, I have been dealing with runny nose, and eyes tearing, as in it looks like I am crying but I am not! My Opthamologist said with chemo dry eyes are usually a problem, but mine are just leaking like crazy right now. Weird.
Indenial, to answer your 2 questions: I call my oncologist' office all the time, but mostly to talk to his staff/the nurse practioner. They are so much more approachable with anything, and they encourage us "better to call" on ANYTHING! So any side effect, I am calling with "Is this OK?" or "Is this normal?". As to thanking other's, I am a big card person and send thank-you's all the time as well. Anything handwritten that shows you took the time is appreciated. I have had so many people step up for me since I have been sick (even sending me money!), and I too always want to make sure they know how appreciative I am!
THOUGHT FOR THE DAY:
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To everyone who is finishing up chemo soon-
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Hi All,
Rough past few days... but mainly in the area of personal life rather than SEs. Still dog tired, cracks in corner of mouth and perpetually drippy nose, but otherwise OK. Had a car accident on Saturday... for a car accident it was rather gentle and I wasn't even sore the next day.
On Sunday morning I woke up with bug bites. I had stayed all night at a friend's house to watch his mom who has dementia and slept under a strange quilt. The first thing I thought was "brown recluse"... One of the bites has now blistered and is nasty looking so today went and saw my MO's nurse. They ended up putting me on Keflex since it was on the Breast Cancer / Lymph Node arm. Apparently even though only one lymph node was removed, my lymph system is considered compromised so they wanted to head off any thought of an infection.
Every day I learn of something new to worry about...
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Feel like I got hit by a Mac truck with my fourth and final chemo. But I am DONE! I cried and cried as the nurse was removing the needle from my arm. Relief and fear of the future, and realization of what kind of stress I've been under, sadness at the goodbye (I brought them home made gluten, dairy, soy free cupcakes -- so I could have one!LOL) They were thrilled.
Going to bed now. Based on how I feel now, I'm a little concerned about how this recovery will go. But, I'll take it a moment at at time. And I have all of you to keep me sane.
Thanks to all my friends here!
Love, Katie
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Katie,
Yeah, for being done! Hope the next few days go easy and quickly. It's almost over.
Hugs, -
So happy for everyone that have finished treatment! I start my taxol portion on Wednesday and am having much anxiety with the unknown. I just got accustomed to the ac. Also feeling very overwhelmed tonight by everything to come. Allmof my port issues have been taxing. I just want to be done already and there is so much ahead, surgery, radiation, reconstruction. Maybe more... it feels like it has been an eternity and its only been a couple of months. I know I will do what needs to be done but I'm feeling beat up and did someone say the taxol causes depression? Oh boy! Scary stuff.
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Good morning everyone! Today is my last TC treatment and I truly never thought this day would come. Time has gone so slowly since my diagnosis in January. After #3, I really had a hard time thinking about going through this again, but now that it's here, I'm so ready!
In answer to how to thank everyone, I've done a few things. I'm a knitter and its one of the things that has gotten me through surgery recovery and chemo. I knit scarves and am currently knitting a shawl for some friends and the home visit nurse I had post surgery. I bought a blessings bracelet for my neighbor who flushed my PICC line for a week when my husband was away. Today I'm bringing brownies to the nurses to celebrate the final chemo. The guidance counselor at the school where I work is also going through breast cancer treatment and next week are are bringing muffins and fruit to thank everyone there. At the end if the summer we're going to have a "thank you" party in our backyard to thank all of our friends who have been so wonderful to us. And finally we're planning a family trip to celebrate all of us getting through this!
One of the positives of this journey is finding out how truly amazing people can be, including all of you warriors! -
Congrats to Katie and Jen for being done!!
I am starting day 4 post chemo #1. I have not had much nausea- just a little in the morning the day after. I am having bad heartburn, severe fatigue, constipation and very achy. Taste buds were pretty much gone immediately. Last night started with a sore mouth and throat- looks like there may be some thrush lurking around. I have the magic mouthwash and used that disgusting stuff last night. I had the nulesta shot on Sunday, and so far no major pain- thanks to you ladies recommending Claratin- Ive been taking it everyday.
Yesterday was a hard day- cried a lot. Frustrated at my lack of energy. It was my last day to taper my steroids, so I think that may have something to do with it. I took an Ativan and it was like a complete turn around in my mood. Looks like that will be my saving grace during treatment. All I could do was lay on the couch thinking- " how can I do this 3 more times?"
I feel bad for my husband. He has been wonderful- doing EVERYTHING and I can see he is stressed. My 14 yr old son broke his fibula on Memorial day and has to be in a cast until at least the end of the month. That means, one less person to help around the house. And now, he needs rides to and from school. I am hoping that I will be able to help with that. I have been very lightheaded with this chemo and am a little nervous to drive.
I am also in the process of trying to apply for financial aid for my daughter for college. She graduates high school on June 20th and has already registered for college, but I am getting overwhelmed doing these forms and worried that things won't be completed in time. I am upset with myself that I was so wrapped up in my diagnosis that I didn't take care of this sooner with her. I am angry and upset that all of this has to happen now. I just want my life back. I am sorry for venting- My poor husband and kids have done nothing but listen to me complain and that just makes me feel worse.
Thanks all for listening- gotta get the kids up for school and wake the hubby to drive. Hope you all have a great day!
Kerri
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Kerri - Vent away. That's what we're here for. We all understand. No one else really gets it unless they walk in your shoes and we're walking right besides you. It's a rough road but you'll get through it. Just keep reminding yourself why you're doing it and it's not forever.
2013 has really sucked but I figure by August I will have my somewhat normal life back. And hopefully cancer won't consume my daily thoughts anymore. Positive thoughts and please take care of yourself and let those around you take care of you. We have to remember this is really hard for them too. It makes them feel better to help out. Stay strong. You can do this.
Jen -
Congratulations to all those who are finishing up this month!! My last AC is on the 10th... then on to weekly Taxol+Herception for twelve weeks! I can't wait
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Katie and Jen, will say CONGRATS to you again, so happy that you are done with chemo, it must feel amazing!!!
Delirium, looks like you and I will be starting Taxol at the same time - here is praying all goes well, how many cycles for you? I am praying the 4 will be it, and then I am told no more even after surgery which will be nice.
This question kind of off-base but I am wondering - did anyone have cancer in one breast and opt to have a double MTX? If so, did your insurance pay for reconstruction for both breasts, or only the one affected by cancer? I am guessing they won't cover my R breast, but it won't affect my decision to take both. Just curious.
Sounds like based on the comments, it is true that the chemo is cumulative in it's effects, getting more side effects as the treatment goes on. Makes sense. Funny everyone mentioning skin issues, but I have not had any, other than cracks in the side of my mouth. Believe me, not complaining!
Jen: I agree, this year sucks! I was telling a friend, despite everything, I am still shocked to look in the mirror, see my bald head, and realize "Oh, yeah, I have cancer". Some days it is still surreal. I guess because I have not had my surgery yet, it still doesn't quite feel real.
Hope everyone has a good day!
THOUGHT FOR THE DAY:
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Heather, I had cancer in the left and opted for the double mastectomy. Yes, insurance paid for surgery, and reconstruction on both. And, if either of your implants cause you problems years down the road your insurance will cover the repair or replacement of that too since they were medically necessary. Like him or hate him, we can thank Bill Clinton for this. Glad he was a boob man!!
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Heather google- Womens Health and Cancer Rights Act
It not only covers both breasts it also covers lymphedema associated with mastectomy.
My insurance handbook has a page all about the benefits, I was pleased that it was out in the open and I didn't have to worry myself and do tons of research.
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Congratulations Pugmom5. Doesn't it feel great to be done with another part of the journey? I hope this round is gentle on you. I know #3 was rough for me as far as fatigue. Today I feel great.
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Heather - All of my scans and MRI showed cancer just in my right breast but I opted for a bilateral mastectomy and insurance covered it. It was definitely the right choice because they found some small spots in the left. Good luck!
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Regarding cracks at the corner of the mouth, I know that anemia can cause that, and anemia can be a side effect of the chemo. I think our digestion is compromised and we aren't absorbing nutrients properly. For those of you who are having this SE, check with your MO about a supplements. I have always felt liquid vitamins were more easily absorbed, especially for those whose digestion is compromised, as ours is while undergoing chemo. Consider a liquid iron supplement plus a good quality liquid vitamin.
About the Taxol, side effects, and nails, I've been looking for info on this for a while. I've heard from others on the boards that they had minimal side effects and no nail problems (even those not chilling nails). Some have had more problems. I've heard that Taxol has less nail problems than Taxotere, but have found no actual research or facts to back this up. I've also heard that both can cause nail problems about half the time, and that it takes 6 high-dose treatments for nails to be affected. I found little direct research to back up any of these statements. (Anyone that wants all the references, PM me.)
I've decided that, for myself, I will do what I have for the AC: spend as much time as possible clutching my ice-filled water bottle. The three-hour infusion just seems too long to try to ice the whole time, even if I could figure out a way to haul in enough ice to keep peas frozen all day long.
I'm also going to discuss with my MO the use of Gabapentin and supplements (L-glutamine, B6) to deal with any neuropathy.
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Thanks ladies for the replies. After I tested negative for the BRCA gene, I just started wondering if they would cover the other side. I have fibrocystic disease in the R side anyways, so I also feel like it is the only logical choice or I will be doing this all over again. Glad to know I am not the only one: a lot of people in my life think I am being "reactive" and that doing both is "excessive". But, if one is already gone, what is one more, right? Luckily, I have had few coverage issues since the beginning, even though I was not able to see the oncologist I wanted to. Take care all!
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Pamela: I'm using frozen peas only for the Taxotere infusion - so 90 minutes.
The best thing I found for cracked lips & corner of the mouth is 100% Pure Vitimin E Oil. I have the 28,000 IU. Doc recommended this when my Mother had a stroke.
As for neuropathy, my MO has approved B-6, B-12 and L-Glutamine. I'm on day 7 after tx#3 and sure wish I could say these are working better. Lips numb, 3 or 4 fingers numb, some right toes never came back and just today 3 toes on left have blinked off. Please let us in if your doc has any other recommendations.
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just got my BRCA results....NEGATIVE.....big SIGH of relief...still fighting fatigue but pacing myself.....thinking of all you Sister Warriors...congrats to those DONE with Chemo....and hang in there for those with more treatments.....I have # 4 of 6 next Friday...oh and found this web site some of you ladies might be interested in.....freebies and discount for those of us on Chemo.....
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That's awesome news Virginia. I was relieved to find out I was negative too.
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Hi All. Today's day 5 post chemo # 1 and finally starting to have a little energy.. Last night started with a severe sore throat.. Tongue looks like a dried up white leather shoe. Went to MO office to check things out... Thrush- all the way down my throat.. Feels like the worse case of strep throat.. The NP says this may be one of my side effects and I probably should take Diflucan after every treatment.. The magic mouthwash works temporarily for about 20 mins after using it.
I've been drinking ice cold things- Popsicles, and had a smoothie..
They are also adding Prilosec to my meds since I've had such bad heartburn.
Anybody have any other ideas to help ease the throat discomfort?
Thanks
Kerri -
Just finished my last Taxotere treatment today! I'm thrilled to now be at the halfway point of chemo, but very nervous about entering the Adriamycin, Cytoxan phase. Taxotere certainly had its share of unpleasantness, but for me it was manageable. After reading about what you ladies went through with AC, and knowing that it's been harder for me to bounce back after each treatment I fear I'm about to get my butt whooped. And the treatments are every two weeks with AC instead of every three with T! Ugh.
So, here's my question. My husband went with me to T1 (fear of unknown), but I went by myself to all the other T treatments. Did you ladies take a caregiver with you to the AC treatments, and if so why? Just trying to figure out if I need to start lining up friends for the next phase of chemo cocktails.
Thanks!
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