January 2012 chemo

Jenn it sounds like you got more TLC than I did.  No warm blankets but maybe if I needed one they would have provided.

I did not get night sweats but I'm 68 yrs old and have been through that in the past.  I hate to tell you younger girls but I still get mini ones now and then.  When I complained to my gyno. that I was still getting them he was not much help.  He merely told me he had a patient was in her 90's who was still getting them.

I know lots of people take Ativan for anxiety (one of my daughters has anxiety issues and takes it regulary).  I have a psychological aversion to that drug because it was what they gave my mother when she was dying.  I suppose if I was desperate I would try it though.

I give myself my shot in about an hour from now.  Because my mother was diabetic and I was a radiologic technologist I felt I could manage myself.  We will see.  I did have my first cancer related bad dream about it though.  In my dream the syringe was soft and spongy like a balloon and popped before I could inject and all the medicine (which looked like cream of wheat) all spilled.  I was in a panic because I didn't think I could get a new prescription soon.  LOL.  

Peggy 

My Echo Cardiogram Appointment was at 10:45 AM 1/5 in Syracuse but we headed out early in consideration of the weather. There were some rough spots near Mexico and Parish. However we still arrived at 9:00 AM. Once we registered, I figured I would go to the Heart Unit and see if they could fit me in early which they did. My good old heart passed the test for Chemo. My Onocologist/Chemo appointment was for Noon but I figured we would see if I could get in sooner -- no such luck. First of all, Dr. Lemke is booked solid -- and the morning chemo patients are still occupying the Fusion Rooms. So, we played the waiting game which heightened my anxiety and was a real challenge for Ed to retain his patience for my sake. However, once we were called it, it was like I was the only patient in the whole would. I have never seen so much skill, professionalism, caring and attention given in a Medical Facility. I first saw Shari (my Nurse Practitioner) who answered 11 of the 13 Questions I had typed out. She is the type that you bond with the first time you meet her. As we talked I mentioned that I am just one of many to her while, to me, she is part of single life experience --- so I asked how she manages to make me feel like her only patient. She said that she puts herself in the patient's place and makes every effort to individualize each one as if they were the only one.  Anyway it helped. Some of her answers: Tylenol preferred for discomfort. I told her that I heard that if you take Claritin before and after the Neulesta Shot, that it could help with the bone pain - she said that she has a chemo patient who did not take it for her first session and had bone pain and upon hearing about Claritin, she took it for her second session and NO bone pain. My plan is one the night of chemo, one the morning of the shot and 2 mornings thereafter.. She said that Biotene Mouth Wash & Dry Mouth Gum is okay. Soft Toothbrush - no Flossing - and Sensodyne Toothpaste is okay. No Dental work during Chemo. Orajel Antiseptic Rinse is okay for mouth sores but if I get them, she will order BMX for me. Lubricating eye drops for dry eye - NO Visine.  My prescription eye drops will not be affected but my eyes may be affected so I will follow up with my eye doctor thereafter. She said that Eucerin is a good choice for the dry skin that is coming my way. For the heartburn -- Tums, Zantac or OTC Prilosec. Shari is a very attractive professional lady -- but when she left the room, she took a moment to tell me that I was sweet and gave me a hug -- Now that helps!!!!!!!

Next, I saw Dr. Lemke who has the reputation of the top Oncologist -- another attractive lady who is skilled and compassionate. She told me I can go back on my aspirin regimen but do not take the COQ10 supplement that I have taken with my other vitamins.

No matter how busy Dr. Lemke is, when she is with you, you are the only person in the world for her and she gives you all the time you need. She also said kind words on her way out.

Next was the Infusion Room - private, heated recliner, heated blanket, TV and chairs for guests. My infusion nurse was Jackie - absolutely devoted to educating her patients and making them comfortable. Of course, I had one more "pick" as they accessed my port. It was not bad since I did not have the numbing cream to use ahead of time. I have it for next time. I got 5 bags and 2 huge push syringes. During my infusion, Jackie spent over an hour explaining my chemo drugs (Adriamycin & Cyclophosphamide), Dehyadration, Cancer Fatigue, Fever (if temp goes over 100.4 - I am to call them because it is a sign that something is starting and we have to catch it before it gets into the blood stream due to low white blood count or I could be in REAL REAL trouble), taste changes, mouth sores, vomiting, etc. After my education, she made sure I was comfortable -- there is a little galley kitchen with Soups, Crackers, Snack Bars, Sodas, Coffee, Water, etc. Since we had not eaten, Ed went to the Cafeteria and got me a Turkey Sandwich which I ate while infusing -- no problem, no nausea then or after. I got done about 6 -- checked out -- and got home just before 8 PM -- and too tired to make any phone calls. I really pushed the water so that I could get flushed out -- of course I saw the pink that I was warned about. I am being careful to follow the rule: Toilet Seat Down & Flush Twice. Off to bed for a strange night - slept good at first then woke up suddenly staring at the ceiling. Back to the bathroom to keep the bladder drained - Back to bed -- could not sleep (probably the steroid) -- felt a little twinge of nausea so I took a Lorazepam which can also make you drowsy -- Perfect Combination!! - the nausea was gone and I slept until 6 AM. I was told that my low count days are 7 to 10 days after Chemo -- days where I should be on strict guard --less people contact- no stores, no church, etc. -- cannot be around anyone who might have had a recent live vaccination, etc. The bottom line is for me to be cautious and protect my health throughout Chemo.

My hair will fall out in about 2 weeks -- she suggested getting short hair cut now to help the transition and it may hurt less.

So those are the details of my first Chemo Session-- it helped me to hear of other people's experience so maybe this will help someone on their way.

As most of you know, I was diagnoses with Breast Cancer when my husband was in the hospital with a broken back. He is coming along quite well - still in Brace for another month.

Anyway, to add to my first night -- he fell out of bed!!! He is okay but You can bet that I reacted dramatically!!!!! lol

Hi ladies! We posted this info at the start of this thread, but thought it might be a good time to repeat it for those who have joined since then.

Check out some great information from the main Breastcancer.org site on Chemotherapy, including what to expect, types of chemo meds, and side effect management.

Hope you find this helpful!

--Your Mods

Rachel, you had a martini?!!!  Woohoo!  I didn't think you were supposed to drink on chemo -- or is that right after.  Anyway, glad it went well for you.  I had no problems except for a little burning in my sinuses after they turned up the Cytoxan towards the very end of the bag.  They just turned the drip down and it stabilized.  I ran a couple errands and then took a 2 1/2 hour nap.  I took a lorzapam at bedtime and slept well.  Probably the best in weeks.  I woke up a few times but fell right back to sleep.  Had some night sweats, but felt like it was because I slept so hard for the first time in a very long time.  Went to work today and feel just fine.  I can feel the steriods ramping me up a bit, so glad I have only one more to take. 

 I'm thinking of all of you who are starting this next week and today.  My thoughts are prayers are with you all. 

AnnTop, I used Penguin cold caps, and did not lose my hair. Had 6 treatments of TCH.

I had my first round of chemo today.  Not so bad!  We arrived very early for the appointment with my MO.  We had to wait, but the waiting room is pleasant and the staff very nice, so it wasn't a big deal.  Much like Jennyruth's experience, my MO is just the best!  She spent a great deal of time examining me and reviewing my recent tests.  Her manner was professional but with just the right amount of warmth and humor.  I think we will have a very satisfying doctor/patient relationship.

The infusion itself was somewhat anti-climatic. I had a port placed on Wednesday, which worried me.  I thought that it would be too painful to use.  I was pleasantly surprised at how little pain there was when the nurse accessed it. No trouble at all!  The infusion started with two bags - saline and anti nausea meds. Next the Adriamycin was injected (2 large syringes) by the nurse into the iv line.  That took about 15 minutes. The Cytoxan was given as a drip and took about 30 minutes.  I did get that funny feeling in my nose from the Cytoxan.  Not at all bad though.

I'm embarrassed to say that I ate a big chicken cutlet sandwich during the infusion.  I guess I wasn't too nervous about the procedure.  However, as the day wore on, I became more tired and had less of an appetite.  By dinner, I had soup.  All in all, not too bad!  I can do this 7 more times!

I think I'll head to bed soon.

Yay Janetanned! You sound so brave. I'm pleased for you.

PCBarbie66-again very brave. I will be getting a haircut very soon. It's amazing how shiny and wonderful my hair has been lately.

AnnTop-I'm very depressed about the hair loss and I hate to feel bad, so this is a nightmare for me.

MNGirleygirl-one down right? Sounds like you did good. Be with me on Tuesday when I have my first treatment. I too am a girly girl, just in NC.

I'm so glad everyone's treatments are going so well; your positivity is helping so much with my own anxiety.

Was supposed to start today, but after the Oncotype test the entire regimen changed so now it's port placement next Thursday, first treatment on the 19th.  Bone scan and echo on Monday.  I was so prepared for today to be "the day" that I needed my hair gone, so I got the cut today.  My stylist is a goddess, and did exactly what I needed her to do - not the half-inch pixie cut I expected (and even asked for - she thought it would be too drastic).  The first cut - about 12 inches - made my cry, but then I realized I was taking control of this, doing it on my own terms.  And when my short hair falls out, I won't know if it's mine, or the cat is just shedding really bad.  :-)  Then, shaving it won't be so dramatic.

Good luck with your hair cuts.  Hair grows back - and we'll be healthy and happy when it does.

MNGirlygirl - I don't want to contradict what anyone else has been told (there seem to be so many different opinions). Generally, you shouldn't drink much on chemo, but my onc said an occasional drink was okay. I did do a glass of wine and a few sips of champagne for New Years as well. I think the big concern is that alcohol can suppress your white blood count - oh, yeah, that's bad... But yes, the martini was a treat. 

AnnTop - Welcome. Yes, I did find the bmx much easier to prepare for and adjust to than the chemo, but you'll make it through. Even the hair. Just keep reminding yourself - the hair will grow back, and when you lose it, at least you know the chemo is doing its job. Definitely consider the cold caps. I found them too expensive, and it seemed like a lot of work. I'm actually enjoying the chance to experiment with wigs, scarves, etc. I don't mind the idea of people seeing me like this - I actually am finding a new beauty inside of me. But we all have to approach it differently, and since I've always loved my hair, it is emotional to lose it. But we're here for you.

Good going to all the first-timers - Hang in there. I really lucked out my first round, and my second round seems to be okay as well. Gave myself the Neulasta shot this evening, along with Claritan and 2 Tylenol. The percocet will be next to the bed. Last time I was a bit achey in the morning, but not too horribly. I worked 4 hours today, and just felt a little unsettled in the stomach. I just made sure to take the Zofran, and chewed a ginger chew and drank some ginger ale.

NancyHB - Going in stages is good. I initially had my hair cut to the length in my profile pic, the shortest since.... HS? I adjusted more quickly than expected, and realized that now it will be easier to reach my 'normal' as it grows back - I don't have to wait for it to reach my shoulders.

CharB - The steroids can help counteract certain allergic or other reactions you might otherwise have with some of the drugs. Same with the benadryl if they give that to you. The whole process is pretty amazing, how they've figured out what works for what.

Shell-Seeker - Sorry you have such a long path ahead of you. I was diagnosed as triple negative, which is supposed to be bad because it's chemo or nothing, but I know that those of you who have the options of other drugs face a lot of additional stress and SEs along the way. Good luck!

Janetanned - I've been lucky not to have lost my taste, and in fact my appetite has been (too) healthy. But enjoy it - you need the energy, and at some point, if we do lose our taste, we'll at least enjoyed it along the way.

Night all! 

Jennyruth - I'd like to add that your daughter's post was great. She is more than welcome to join in from time to time and update us if you're not up to it. I'm sure it's important for her to see that you've got support and people to turn to.

Figuring out what to avoid is tough. If you've ever watched the Monk series (Gary Shalhoub as a detective with OCD), I'm starting to feel like that. I have hand sanitizer in my chemo bag and on my desk at work; every couple of days I spray the (communal) computer keyboards at work, as well as doorknobs, etc. I work at a radio station, so there's a lot of common hands-on things to worry about, and a few people who think nothing of coming in to work sneezing, coughing, or having sick kids at home that you know just gave them what they had. I'd start begin careful about 5 days in, since if you catch something, it may take a few days. Just try to avoid being in close quarters, and if you hear someone coughing or sneezing, head the other direction. I've gotten the impression that the bigger concern is your hands - keep them clean and avoid touching your face, eyes, nose and mouth, because that's how you're more likely to get the germs where they can do harm. If you get cracks in your fingers from the cold/dry skin, wear bandaids. I bought two pairs of 'antique' white gloves and I've been wearing them at work during my more vulnerable times. You also want to avoid catching anything in the days before your next treatment, because if your white blood count is down, they might delay the tx. I have 3 weeks in between, so I can almost feel normal for about a week, but it must be hard being on the 2-week plan.

What annoyed me the most when I had to make one of my two trips into the ER last month - they made me wait 50 minutes before taking care of me. I refused to stay in the very crowded waiting room, but the next best option was about 15 feet away in one of the spare wheelchairs. If you do ever wind up in the ER with a fever (ask your onc what they consider the 'must go' level - mine was the fairly moderate 100.5), I was told the first words out of your mouth must be:  I'm a chemo patient, I have suppressed immunity, and I have a fever.

Despite all that, I think I am managing to avoid being paranoid. If anything, this is really making me appreciate all that our wonderful immune system does every day and we never realize! 

Good luck - and happy Saturday to everyone!

Sending you good thoughts - I'm finding the hair chages sort of liberating. I'm sure your daughter will be your biggest cheerleader!

DianeMNil - I can't really weigh in on that one. Not sure what benefit the C provides (it seems to be the least toxic and worrisome of my three-drug cocktail...). But if you trust the BC and the one onc, your gut is often the best way to go. Maybe just look online to see if there's anything specific about C that might make a difference.

One thing about mouth sores - I'm not sure if anyone else mentioned it on here, but I have been using Biotene toothpaste and also the Biotene mouthwash, which is made for dry mouth and mouth sores.

Okay, time to get away from the computer and do something. 

DianeMNil  I agree with Rachelvk...There is nothing we can do to help you...I hated that process the most of everything so far...We ended up switching to out 2nd opinion facility and MO and are very happy..You need to figure out who is looking out for you and has your best interests in mind...My first Dr.was scared to hit me with the Taxol due to some health issues...the other offered a longer Chemo with the Drawn out 12 sessions of Taxol for 12 weeks to monitor and watch the SE's to give me the Toxal she felt I really needed to make this work....We really liked the first doctor and felt weird considering a second opinion, but during the last visit with the first MO we left there with doubts and unanswered questions and she was ready to set a date for Chemo even knowing we were not satisfied...The second Opinion MO that we switched too, really looked at my info, my pathology...not a slide rule...not a "you all get this kinda person"...she was very clinical, good stats, facts, trial info...you'll know which one is right for you...It just finally hit me..2 days after the second opion...this is the right thing to do...You'll feel one has your best chance to beat this...You can always go for a third opinion if you have time...Good luck and let us know...you're gonna get through this