October 2013 Chemotherapy

lgkgde13

thanks for the words of encouragement maltomlin!

Viji

Yes my MO told me that we have to be extra careful with hygiene in the bathroom for the 1st 7 days of treatment, cover toilet before flushing and washing hands thoroughly. This is because our bodies are excreting the toxins.

The watery eyes are to be expected so we should use a moisturising eye drop.

It is really important to take care of our skin too as everything dries out. It is a toxic mix of chemicals that is being infused into our bodies and so the SEs.

naiviv

Sunny,

I had TCH on 10/25. Only SE I have left is the  mouth sores. Otherwise feel pretty good overall. Keep drinking lots of water and rinse your mouth with salt/baling soda several times a day. The sores are a royal pain. i only want to eat very cold things and even they dont taste too good. I had my first solo H today and feel well so far.

Feel better soon

V

Sunnyca

TeamKim, thank you for your comment. I didn't take Neulasta shot, maybe that's why I'm still down. I'll ask to Dr. next chemo treatment. Thank you!!!

Sunnyca

Naiviv, thank you for your comment. So you are taking weekly herceptin? We both can make it, 5 more TCH and I year herceptin! Thank you!

SchoolCounselor

I got the neulasta shot today, took claritin before and plan to continue to for the next 5 days, other than hydrating myself what else should i be doing?

Thanks!

Sunnyca

VintageGal1111, thank you for your comment. I'm trying to drink a lot of water and hope next treatment will be better. Thank you!

Gramof2boys

Hope everyone will feel good this weekend! CBC today was good WBCs were 6,so 1 more Neupogen today and I'm done. Finally a free weekend. Chemo #3 next Friday, I have a breast ultrasound on Tuesday to see how tumor is responding to chemo, I'm doing neoadjuvant chemo. I can tell it's working though because I can hardly feel lump in my breast anymore. I will let y'all know the results when I get them so the ladies who are doing or will be doing similar tx will know.

Wrenn- hope everything went well for you, keep us posted.

Have a great weekend everyone, I will sure enjoy mine!

Julie

Tipps04

schoolcounselor - hi. Good u r taking the Claritin. I would suggest first signs of any aches, take whatever your MO recommended. Originally I as told only Tylenol. However nurse practitioner who gave me shot said if it was going to be bad Tylenol would not touch pain. She said my blood counts were good so she cleared me to take aleve and Motrin. However, I started to feel achy Friday night but did not take anything. I thought that was the extent of my SE's. By Saturday I was completely laid out in horrible pain. In hindsight, might have not been so bad if I had stayed ahead of it. Good luck this weekend! I will b sending positive thoughts your way!

TeamKim

Like Schoolcounselor, I had my Neulasta shot today. 2 hours later I had 102 fever!!! Called the MO on call and he said to take two Motrin now with food and two more at bedtime, then to call him in the morning if the fever is still around. He said fever from Neulasta is not that unusual because your bones are making WBCs like crazy as if you had an infection. I have been taking Claritin yesterday and today, and will continue for another 4 days -- MO said I would probably need to take Motrin every 8 hrs through tomorrow.

Any of you gals have fever with Neulasta? Scared me, since I had goosebumps and shakes and chills.

wrenn

That would scare the pants off me Kim. I am so glad you got to talk to MO. I hope your temp is down by morning. I hope you are able to have a good sleep too.

And it's good to know that can happen.

kittykate78

DebDylan - I've had skin issues (super dry skin, rash, itching, etc) as well and just got a bunch of great products from my brother's girlfriend who is an esthetician. She was very adamant about using products without certain additives, like parabens. They will be pricey, but I figure its only for a few months. And, like you, I am not willing to sacrifice every bit of my reflection to this damn disease! She sent me:

Aveda All-Sensitive cleanser, make up remover, moisturizer, & body formula (oil)

Aveda Balancing Infusion - this is amazing because you simply add a few drops to your moisturizer and it makes it a super moisturizer.

Aveda Intensive Hydrating Mask ( a gel that you use like a 5 min facial)

Aveda Scalp Remedy (it's for dandruff but she said her chemo patients love it)

Aveda The Way of the Bath body lotion ( any of their body lotions will work, as they are paraben free)

Origins Natural Deodorant (only one I've tried that actually works! No aluminum!!!)

It's also super important to use lukewarm water in the shower and when you wash your face. Hot water strips away what little oil we have. I bought an Earth Therapeutics Anti Bacterial face towel and sponge; plus, we wash our towels twice a week.

Keep in mind that you are not just doing this for vanity. Dry, cracked skin anywhere is an invitation to infection, which we cannot afford! I moisturizer like a mad woman! Lol

I've got a few links to other products and options for those of us with skin SEs. I'll find them and post. I find my skin on my hands getting really dry from washing all the time, so I put a tube of Eucerin by each sink and one in my purse

I've also got the watery, itchy eye thing and its super annoying. I wear my contacts for limited time and bought Refresh drops for contacts and Alcon Eye Stream drops for non contact days. Also finding my mascara makes it worse . Any suggestions for a mascara that is good for sensitive eyes?

Had my 6th Taxol today. Halfway thru the T and then onto AC.....dreading it. My lump has not changed size or anything. Freaking out that its not working but I know it's early still. These headaches are starting to wear me down. MO called in a serious migraine med for me. Hopefully it will help. Love and strength to all you brave ladies!!!!

naiviv

Sunny, Yes I am weekly Herceptin. Had it yesterday alone and so far I feel ok only a little headachy, no SE's

School Counselor, If your MO oked Advil, if you feel any pain starting take it. Don't wait. Warm showers were also great. I wish I could have gotten in tub, but I still have breast issues. I think relaxing in a warm tub would be great if you can. Walking helped me also. My worst was at night, I couldn't get comfortable to sleep and I took a percocet / 1/2 xanax and it knocked me out. My MO asked if I had pain meds at home and told me to use if I needed. She also told me the first time may be strongest reaction, she also told me reaction would be a mix of taxotere (joint and bone issues) and Neulasta issues. For me it was only 3 days, day I woke up it D...pains were gone.

SchoolCounselor

Hi Ladies,

Looks like we re in the throes of it. I have been taking motrin every eight hours and took claritin this morning. I cn feel the bones in my back aching and I bought an electric blanket that I m wrapped up in.....here we go. TeamKim, I am sorry about the fever, glad you re on top of it.

With regard to skin, I make my own skin products, using mix of she butter nd oils, it is perfect for my skin now and seems to be working beautiful. My scalp started to tingle little today and I have cut my hair really short.

I went out this morning to get bagels, my girls had sleepover and I wore my scarf, nd gloves, looked like a cancer patient, oh well, the good thing is woman coughed behind me and when she saw the alarm in my face she backed up little.

We got this, ladies.

Wrenn any final decisions made?

wrenn

Schoolcouns, I love reading about the different ways you guys handle these side effects.What a difference it makes instead of thinking that I am the only one in the world going through this. Makes me feel "normal". :-)

I think I will have chemo starting on Nov 25th but am still wondering if I should. From what I read about metaplastic carcinoma (turns out my IDC has these features) chemo may not benefit. I am also a bit worried because home care thinks my wound looks infected again. I am keeping an eye on temp and taking lots of vitamin C.

I'm taking notes from your experiences though just in case.

Hope everyone else is doing ok and Kim I really hope your temp is down this morning. Take care everyone.

Pam358

Add me to the club of watery eyes, I also have the runny nose to accompany it.

{{{Tipp}}} hugs for hair tears

My MO's office said to flush my toilet, lid down, twice after using it for the first 48 hours and if you have the luxury of a second bathroom that's even better.

2Timer - I think it's normal for side effects to show up anytime. I think they are more pronounced just after treatment.

Kim - scary fever, but the explanation sure makes sense. Hope it goes away quickly.

A week after my first treatment some pain showed up - back, torso, etc. Once it was under control I was able to manage it with scheduled tylenol. I talked to the MOs office and they didn't think it was due to the Neulasta shot since it showed up a week later but we'd watch it after 2nd treatment. I haven't taken any Claritin because my MO isn't convinced it works and asked me to try it without. Like clock work it showed up again after treatment #2 - same timeframe, same type of pain, etc. My current theory is that it IS related to the Neulasta shot and that it was under control for the first week because of the amount of dexamethasone in my system. I get IV dex, and a whopping 20mg dose, the day of treatment as well as the next two days - all part of my anti-nausea plan. It's clearly still in my system on Monday and Tuesday as I have sleeping issues and feel over caffeinated without any caffeine. On Wednesday I'm going to talk with them about trying the Claritin - maybe it will help with the runny nose too!

SpecialK

pam - do you want the link to the clinical trial for Claritin and Neulasta?

wrenn

specialk. I'd like that link. My MO insists Claritin would make no difference

SpecialK

Here you go, also I would question why resources would be expended on this trial if there was not a lot of anecdotal evidence that it worked for people. I started taking it prior to my first Neulasta injection and it worked very well for me. I forgot to take it prior to the third Neulasta, but took it 30 minutes after - I had far more bone pain for that injection. I never forgot again for the remaining three injections and when I took it properly I did not have bone pain, so for me, it was not a cumulative issue from chemo or Neulasta, just a bad timing issue on the Claritin. Since it is basically a harmless addition I would ask why they are opposed to it, if they are - is it that they just don't believe it works, but are not opposed to you taking it?. Make them justify their position if they are asking you not to take it.

http://clinicaltrials.gov/show/NCT01311336

TeamKim

Thanks for all of your well wishes, chemo sisters! Still have my Neulasta fever this morning, though it is down to a more manageable 100.4. MO said I would probably need to take Motrin throughout the day today as well, then could taper off. Have not been able to find anything online about fever related to Neulasta, though MO says it is not unusual. Also, as my fever went up yesterday, my appetite disappeared, so I am needing to coax myself to eat something every couple of hours.

Schoolcounselor, I am wrapped in a blanket too, and bought some of those stick-on thermacare warming pads in case a particular area gets troublesome. Pain has been mild so far, though.

LiLi1964

Hey, Ladies,

I've been quiet this past week.  Was totally unprepared for what chemo/Neulasta brought on; I see it looks as though many here are really suffering.  Damn, this chemo sucks, doesn't it!?  I've just had 1 treatment and am losing that "positive" attitude real fast given what I've been thru.

I went to work one day this week, on Wed.  I’m not sleeping more than 2-3 hours a night. I did attempt to get ready for work on Thurs but began having what felt like panic attacks (not that I know what they are – I’ve never had one but it sure felt like that).  I called in sick then sent one of the owners a detailed email explaining how I felt like an idiot at work on Wed and could not remember how to do the simplest of functions.  I completely broke down when my co-worker left for lunch when I had the office to myself; it was almost like my mind just could not process things that are so routine.  I was so relieved to get home to my “cocoon”; for that is how I really felt…my home is my place of safety and the only place I could feel “normal”.  I explained to my employer that I felt guilty being paid for sitting there being stupid.  He was actually relieved (not the right word but…) and emailed me back that he had noticed I was having a very difficult time trying to work.  I didn’t go in again Fri; I took 2 Ambien Thurs night hoping to get a full nights sleep so I could get back to work but again only slept for 3 hours.  Then up since 1:30am.  Still feeling a bit out of it.

That’s not what I expected of “chemo brain” if that is what happened.  It has me so scared….if that is what a person actually feels and knows who is at the beginning of dementia or Alzheimer’s….dear God, I can’t imagine how they cope as their disease progresses.  And it has me so scared, like, what if……it gets worse w/each chemo?  Am I completely and irreversibly damaging my brain cells w/chemo?  I can’t get those fears under control….I sent an email to my MO on Friday but found out she will not be in until Monday.  I asked her to address this because it felt far beyond what she and I talked about (I got the impression when I asked about “chemo brain” that it was just a little forgetfulness so I passed it off.  That I can handle…but this was far worse than that!).

Granted, and I told my employer this, it could be total and utter exhaustion from not being able to sleep (and I’m not taking Dexamethasone anymore…took last of it as directed Tues night – MO told me to take it an extra couple days because of the horrible bone/joint pain I was having from Neulasta).  I pray that’s all it was.  If that happens every treatment, there is no way I can work while undergoing chemo and I DO want to keep working.

Has anyone else had anything like that happen? 

Just a note about the dry, itchy eyes.  I did see someone else mention it, but wanted to add that my infusion nurse suggested the same product for this SE – use the Refresh Eye Drops.  She highly recommends that product in particular…..

Teamkim – I also was running a fever after Neulasta.  Mine was just a low grade fever but I never would have attributed it to the Neulasta.  I was asked to keep track of my temp (figured it was just because our bodies are so prone to infection) and noted the low grade fever for several days following injection. Strange….I don’t recall having read anything about Neulasta being the cause of a fever, have you?

SchoolCounselor

Hang in there Lisa, this is not an easy road, but we have each other. I have taken off from work until February, but will probably extend it. I have to be back to myself, brain and all. Chemo brain does get better, it was my biggest fear, but I am assured that it will.

This is not an easy road, and not one any of us would ever choose, but we can and we will do it, we are warriors and survivors ( i have to keep saying that to myself too) we are conquerors. We will do this together and we will make it through....we do not have a choice....please hang in there.........

TeamKim

Awwww Lisa, hang in there, sweetie. I have not had the panic and confusion you describe, but I forget everything unless I write it down. I have DH texting me throughout the day to remind me and I have alarms set up on my phone and computer to remind me so I don't forget to go to something. I think we are all different with regard to chemo brain (like everything else) and we just have to remind ourselves that it is temporary and cope the best we can. We can be strong together and for each other -- it is good that you have the option of taking some time off to cope. My guess is that it will get better sometime in your second week.

No, I haven't heard of the Neulasta fever either! and so it scared me when my temp shot up suddenly and I had chills and shakes. SpecialK, resident expert angel, have you heard of this Neulasta SE before?

SpecialK

I often ran a low-grade fever but I never broke the 100.5 barrier that warrants medicating or attention by my MO. I also wonder if the stimulation of WBC (infection fighters) by Neulasta triggers the body temp to elevate because fever is the one of the ways the body combats infection - like a symbiosis with the WBC production.

Sometimes it is hard to suss out what are chemo SE - particularly neutropenic fever, what are Neulasta SE, and what are SE from pre-meds. Here is the physician warning for pegfilgrastim (Neulasta) SE - note the fever reference, and they will sound familiar to many of you, even those who have not received Neulasta:

"General side effects associated with the administration of pegfilgrastim (the active ingredient contained in Neulasta) have included many effects that have been associated with the chemotherapy that was given concomitantly. These have included nausea, fatigue, alopecia, diarrhea, vomiting, constipation, fever, anorexia, skeletal pain, headache, taste perversion, dyspepsia, myalgia, insomnia, abdominal pain, arthralgia, generalized weakness, peripheral edema, dizziness, granulocytopenia, stomatitis, mucositis, and neutropenic fever. Most of these effects have been attributed by the investigators to be the result of the underlying condition or the chemotherapy administered."

VintageGal1111

Hi Gal

people ask me how where I learned all this stuff especially about the SEs & I tell them at the breast cancer forum. Internet, books, pamphlets, etc are so generalized. Right here is where the info is that we can relate to. We all are living it! And though our symptoms vary it is so helpful to hear it first hand what SEs we all are having & how we are dealing with them.

Thanks

VintageGal

TeamKim

Thanks SpecialK, for the details -- it makes sense. I know I speak for all of us on this board when I say how grateful I am to have your expertise in the mix of our discussions.

My MO said the rapid production of WBCs in the bone marrow produces another substance (I forget the name) that triggers fever. I wonder, since my WBC was kind of low (3.5) at the time of my infusion on Thursday, if the Neulasta shot had an even more pronounced effect. After my first chemo round, when I didn't have any Neulasta, my WBC count 7 days later was 1. The following day I got a fever, and the MO brought me back in for a single shot of Neupogen and 7 day course of antibiotics. In that case the fever preceded the Neupogen shot, and didn't get any worse afterward.

VintageGal1111

Oh Lisa, my heart goes out to you. What a scary thing.I hope it helped a little to be able to vent to us here.

Which brings me to my question. Who is going for therapy, counseling, mental health help? If my insurance ok's it I may consider. My PCP just stopped doing primary care & is focusing on mental health. I know I would feel comfortable with her.

Just the last couple days I am getting that thought creeping into my brain...."how will I ever get through this"? My diagnosis was in Aug, surgery in Aug, my chemo treatment started in Sept & I won't finish til NEXT September! (with possible more surgery & radiation) The road is looking very very long & the last 2 weeks of bad SEs started to get me down.

VintageGal

SchoolCounselor

I have been in therapy for 4 years, for life stuff. I could not get through this without going to counseling. I have my faith, the love and support of my family, but in counseling, there is no judgement, pity, I can be raw and real and fall apart and put myself back together with the help of my therapist. I highly recommend it!

JenSF

Dear Lisa, don't be too harsh to yourself! Don't pressure yourself if you cannot cope with work during treatment. Did you explore short term disability with your emoloyer? Check edd.gov. You may not get full pay but that would help during these process. You have to focus on fixing your health. You have a long road ahead after you recover and go back and enjoy your career! Don't be sad.....we will all get better.

My 17th day after 1st tx. My short hair style still looks good. But I truly can't stand the forever shedding and clean up. Have shaving appointment this afternoon. Just get this over....I can go to my hats and one wig!!! Love, Jen

lgkgde13

I have not done the therapy route but could see how helpful it could be as ii would have someone to talk to without feeling like I am dumping on my DH and friends.

I had low grade fever on Thursday but did not break 100.4 mark. Scared me a but since neutrophils so low this past week at 300 on Tuesday ( I can't get neulasta)