September 2013 Chemo Group

Thanks ladies for all your suggestions. It is frustrating that I have to remind my husband that I am the one with cancer. I'm nervous & scared about chemo, trying to stay positive. This week I'm going to cut it really short. I haven't ordered any hats, but did get two scarfs,thank you for all the information.

I understand being disappointed in people. My only sister (we were so close) has fallen of the face of the earth, when I was first diagnosed she would call me crying and I was the one who had to comfort her on the phone, now she has come up with excuses to my mom why she hasn't called and couldn't come to visit me when I flew to the west coast. I've told my family and friends that just getting a txt that they are thinking of me is the greatest gift cause I know it is hard since I moved to Hawaii. Learning who my true friends are and letting go of my disappointment w/my sister has been a hard lesson.

Hope everyone has a day without SE or that it's manageable today- really thankful for this website.

Pat- It depends on you.Also which week you have chemo. How are you normally when sick. I am a big baby and need to know someone is around. My Mom in law thinks I am crazy and selfish making my husband be around for chemo and time after. He works a job 5 hours away and is usually gone 2-3 days a week so we have to juggle schedules a little. My m-i-l wants nothing to do with people when she is sick herself and thinks sick people need to be left alone. So everyone is different.
Personally for me I would suggest him being there since it's the first time that have chemo.Can they reschedule the trip for a later date? I found the whole first time worry some and new. I didn't know what to expect, the steroids kept me from sleeping and I started to get crazy with my emotions. My husband ( who teaches college) HAD to leave the second week...it was the first week of classes. Lack of sleep added to just making that an emotional/ scary day. I worried about all that could go wrong.I have three teen age boys here to help...but they are boys and teens...only so much they could and can do. Physically you might be OK by week 2 but emotionally you might not.

Hey Kbeee. You say your nose felt weird was that when you were getting the chemo? Both times I had chemo (CT) the "c" gave me a weird brain freeze for a few minutes and then moved to my nose/ sinus. Just last 5-8 minutes. It was weird and nurses looked at me like I was making it up. What was your "weird" nose thing like?

Lovewins - Thank you for the advice.....I havent been able to eat very much food the first 11 days but with my husbands gentle pushing I have been drinking pretty good but still seem to need fluid every couple days to help anyway. I seem to be feeling a little better and I aam thinking it i the lack or not enough food. I am also wondering if my best approach should include some type if GI tract care....alternatives, teas or something to help it along....just a thought.

Welcome to all the new members! - This group has been a big part of my support help and I know you will find it a helpful and comfortable place to find awesome information and that it provides a great outlet to get thing off your chest without judgement. 

Hope all are doing well - sending strength and loving hug to all!

Traci

Big hugggss to you mamastewart....its a shame that people's true colours have to show when you need them the most.

Saw my onc today...he figures that my initial chemo reaction will carry through for all of my treatments....got my nausea meds and home care nurse on speed dial

Mri result...spine getting worse but not cancerous...

Hubby and I visited with our son while in Ottawa...bought a bathing suit top at walmart for 2 bucks....gonna dismantle it for use as piccline cover...felt a trickle on my arm while at cash....piccline bleeding.

Went back to cancer centre to see what to do...no one knew what to do..had never seen that happen before..,got seen immediately and had line cleaned, flushed and retaped.

The nurse figures it got stressed at the insertion site and that is what was bleeding....oh well...all better now lol

Alright...jammie time for me

Sleep tight and have a great day tomorrow

Kbeee- Greetings back to you in Iowa...Are you in Northern Iowa? My siblings and I all own/inherited a part of a farm there so you get some of my taxes yearly. :-) Interesting to know about the sinus thing...I googled it and found others have experienced it too. It's funny how they all acted like it was some weird unheard of side effect. They made me wonder if I was imagining it.

Hello Ladies,

I'm new here.  Had my BMX in August and am scheduled to begin chemo on 9/26 so I'm a late-commer here and have not yet begun my chemotherapy.

I've purposely stayed away until now because I don't necessarily want to read anything that would worry me before I even start.  I know there are many, many side effects (many that seem quite unpleasant) but I know there are also many ways MO's have to counter-act those SE's to make the therapy as tolerable as possible.  I look forward to joining in and "comparing notes" along the way as well as finding suggestions that others have found most helpful in making this experience easier.

I'm scheduled for a PET Scan on Tuesday as well as an EKG.  Genetic Counseling is just in the beginning process and I've no clue when that will be completed.  Chemo to begin first thing Thursday morning.  I've opted to NOT have a chemo port placed; I've been told I have very good veins and it is my hope that no port will become necessary.

So...that is a question I have for anyone that might assist in this matter - other than keeping well hydrated and keeping the hands warm, are there any suggestions to keep the veins healthy and ready for chemo? 

I hope everyone is doing well in their therapies and are tolerating any SE's as best as possible.

Diane. Happy for your bad back news!



Wonderful weekend wishes to all!

Feeling nauseous. Took my meds still not feeling good. I hope it goes away soon. While I was showering yesterday my hair started to come out. I don't care how short it is and that we expect it to be out. It still hurts to see it all over your hands and body.

LiLi - how many chemo treatments are you getting? I'm doing 4 so a port didn't seem necy & 2 in & it's been fine. Definitely drink TONS of water for a few days before, it really helps pump up the veins. And keep your arms warm too. I've had trouble with blood draws in the past but no problems w/chemo IVs so far.



Cougarlicious - didn't realize we were so nearby! My onc's clinic is in Campbell, it's small & has only 1 private room that's used by a lady doing cold caps.



So far day 3 of this 2nd round is pretty much the same as the last - a little tired but nothing else. Day 4 was what kicked my butt. But I'm taking Claritin this time, I have Percocet, & my dr noticed I was vitamin D deficient & she said there was a study about bone pain & vitamin D deficiency so she prescribed a supplement. Unfortunately that takes a while to build up, but maybe it'll help for the last rounds.



I also chewed ice during the infusion this time - didn't have mouth sores during #1 but had thrush, so seeing if it'll help. Started the salt/baking soda rinse immediately too as a preventative instead of after thrush happens.



We'll see if there's any changes!

So I have very sore spots way in the back on each side of my tongue... maybe where it rubs against my teeth?  I can't even see or feel back there... it just really hurts when I swallow - almost makes me feel like I have a sore throat.  I have been rinsing with biotene and even tried peroxide/water several times yesterday.  Not helping.  Today as a last resort I bought Orajel to numb it just to give me some relief.  Any ideas?  I don't have any other mouth sores.

My sister-in-law had given me an Orajel mouthwash that says it's for mouth sores, but it contains alcohol which makes me leery.  Might have to try it.  Other than this stupid tongue/mouth issue, I'm feeling great!

Badcatlady - I'm having dose dense Adriamycin & Cytoxan every 2 weeks for a total of 4 treatments followed by Taxol every 2 weeks for 4 treatments.  So every 2 weeks for 4 months for total treatment.  I'm glad to hear you've not had a problem with the chemo w/o a port (sorry to hear about issues w/blood draws). 

Peacockgirl – thanks for the info.  You know, I heard that from Honeybair over at the August 2013 Surgeries thread and I have to admit, it’s got me concerned.  She basically told me the same thing you did and I’m thinking I need to have a long talk with my MO and the nurses at the infusion center about this.  Someone over at the other thread also mentioned something about a PICC line – does anyone here have info on that?  I don’t want a port!  I heard that chemo ports can but implanted in the arm but apparently that procedure is not done at the clinics/hospitals I’m using.  But I’m starting to think I need to be a little more open minded – for my own good (yeah, I’m stubborn sometimes but don’t want my flaws to get in the way and end up having me make bad decisions).  So I thank you for informing me of your experience.  I too had 2 nodes taken from each side but I was told it did not hamper either arm from being used for anything; were you told something different?

Cougarlicious – thanks for the input; it appears you too are receiving the same chemo regimen that I will be getting.  However, my Taxol will be every 2 weeks but yours appears to be every week – are you taking part in the National Study with the addition of Herceptin?  I know very little about chemo (I guess I’ll be learning quite a bit – seems that’s the case w/all things related to breast cancer….if you didn’t know it, you will by time your done w/all treatment!) but I have to say I had never heard of weekly chemo except when my MO asked if I wanted to be included in the study which would add Herceptin to the Taxol.  That’s why I ask if you are participating in the study.

I feel terrible for you being diagnosed while 6 months pregnant!  Like it’s not hard enough getting a diagnosis but to get it while pregnant – that’s a tough pill to swallow.  I’ll keep you in my prayers that all ends well for Mom and Baby!

Thanks again for the assistance and thoughts and experiences – it all helps and I think I have some deep thinking to do as well as a long talk w/MO and Infusion nurses…….I don’t want to harm myself by refusing port if in fact it is safer.  I don’t want a port in my chest; I want everyone to leave my chest alone for a while as it took so long to heal from surgery.  Let’s face facts here – I don’t want to have had cancer or think about still having possible cancer elsewhere but it’s in my lap and I have to deal with it.  I have some decisions to make……..

Lighthouselady - Thank you for your kind words and advice.....I will be talking to mo on Monday for what changes or options at his point.

I am normally a strong person that some would describe as borderline obsessively independent. I have the hardest time accepting help from anyone even when I am sick. For one reason this chemo treatment has knocked me on my ass so bad that I have been forced to allow the help. I realize that people are taking my diagnosis so differently. Some have been overwhelmingly caring......I know I should not complain but some times you are just not in the mood ( for lack of a better description ) and some people called at first and then I havent heard from them since. I also have some friends that did not even respond to the news. I finally realized that no one knows how one reacts to things...it not like there is a published code of conduct. Just like I have feelings that I would have never expected and have reacted to things in ways I dont understand. Even when I have the best intentions sometimes I fail to follow through. At times I have even regretted making the calls to everyone each time when I had an test results or updates to give. So I think I am going to finally start my Caring Bridge site and maybe this way I can keep everyone informed at my pace and and also give them a place to send messages if they want. Maybe this will help take the pressure off everyone.

Kbee - Thank you for the information on the infusion length makes a difference with the headaches. I dont understand why they would not make this standard practice to avoid them anyway. I dont know about you but I would rather be there longer to avoid SE's then get the meds faster.

PORT - I initially was against the port and then decided to allow my BS to put it in when I had surgery. Well - I am SO grateful that I did....They have had to access my port 9 times in 13 days for either bloodwork, fluids and meds. If I did not have the port I would be a pin cushion by now not to mention how much my poor veins would have had to endure. Yes it bothered me the first couple weeks.....when moved certain ways etc but all that has settled down and now I hardly even remember that it is there.

(((((LisaSP))))) - I feel your pain......I had diarhea the first 11 days and it trully sucks the energy out of you. Take Imodium each time you have it and try to hedge it off. If that doesnt do it ....dont wait like I did....call the doc. Hope you feel better real soon!

(((((Alfranco)))) - I also struggle with the nausea......I have tried so many anti-nausea drugs I wonder if there are any others. Phenegran and compazine have worked the best but none completely have taken it away. I plan to keep asking, trying whatever and will let you know if I find any other things that work. Hope you feel nauseous free very soon! 

Welcome Jane and LiLi!

Thinking of all of you! Sending good wishes for no SE's!

Traci

Be who you are and say what you feel because those who mind don't matter and those who matter don't mind. - Dr. Seuss

Hi, all. I haven't been on here in a couple of days, and it looks like I have a lot of posts to read to catch up.



JellyK, I'm on Taxol by itself right now. I've only had one infusion so far, but I'm felling well. A little tired in the first couple of days and some trouble sleeping at first, but overall it has been fine. I really hope it stays that way! And I hope it is easy on you when you start it. I'll let you know how the next one goes.



I'm getting a port Monday morning before my next infusion that same day. Apparently the chemo nurse didn't like the looks of my veins. Any port advice or heads up on what to expect?

Vanessa, I know people have had different expericences with the port as with everything. Mine was tender for a few days. It's on my right, so if I was laying on my left side, I think the weight of it felt like it was pulling a bit, making it a bit more tender. Overall it hasn't been bad. I've had two infusions and then several blood draws through it also. I prefer that to arm veins. That bothers me more.

I believe this process we are all going through will certainly make us more compasionate and understanding of others in similar circumstances. We now know that just the little things are important. Just someone letting us know they care, a phone call, any form of contact is better than just being forgotten. This is hard to comprehend.

I'm a month out first infusion and can't believe I still have some hair. Kind of a Trump thing going on. If I go out, I comb everything from the back to give myself some bangs and put my pretty flower cap on.