Starting Chemo July 2013

Thanks aaoaao, I will definately pick up some of those items.  Did you take them right away?  I am more concerned about the other happening as i have had bouts of IBS.  I guess we will see.  I don't mind IV's but am a little apprehensive about the access through the port.  Was there any discomfort when they access that for your first infusion?   How are you doing on Taxol?  I have 12 doses to complete once I finish the first 4 rounds of AC.  Some say it is easier?

Rambo50-Honestly, for me the port placement was a piece of cake.  Try not to worry and relax. I know everyone is different, but if chemo is that easy I can handle that.  My class is monday, and yes alot of quesions. 

I love my port as well. I've had only one treatment, but it was so easy. I do adjust my seatbelt some days, but mostly it is just fine, and I have no problem with my bras, the straps are outside the port area.



I am so glad I had this installed, so convenient.

PortlandLady, I highly recommend practicing with the caps prior to chemo with your helpers. I did yesterday and I cannot imagine figuring it out on the first day of chemo.

Mellie289 -

I think it's great you're getting a second oncologist's opinion.  Let us know if they differ!  Do you know anything about differences with port placement in chest vs. arm???  I'm curious - I go for mine this week as well.

Hope you have a wonderful birthday!!!  Seems my 50th birthday/26th anniversary "present" was this rotten BC dx ;-)  Sometimes all you can do is laugh!

To anyone out there - 

How have you handled work?  I know many work through with flexibility but I teach and really need to make a committment to DO it or have someone step in for the semester (in which case I won't get paid!!!).  I've got a fantastic NEW job as a college professor after 15 years of teaching high school, but this dx has put me in limbo with benefits and such (thankfully I'm covered medically under hubby's plan) so I don't really have any sick days to work with...  Lots to think about.

My best to all of you who've already started your chemo

Mellie - I'm actually full-time faculty as well (did some adject work prior to my hire literally 2 weeks before dx).  They'll pull in someone for me too, if need be.  Right now we're trying to arrange my teaching schedule so it works with my chemo schedule - i know that may be wishful thinking on my part!  Nonetheless, I intend to do what i can, holding some hybrid sessions if necessary ;-)

TwoHobbies - Have you participated in the Look Good-Feel Better program? I'm going July 22nd and am hopeful they'll provide some pointers on eyebrows and lashes (as if head hair loss isn't bad enough!).

http://lookgoodfeelbetter.org/

And, if anyone needs some inspiration - especially you triple negative gals - check out Jennifer Griffin's story:

jengriffinblog.blogspot.com

Thanks, Marsha1970! Did you practice with them frozen or not? I won't have time to freeze them, I think, they are due to arrive Tuesday and my first treatment is Thursday. But maybe if I get them in the freezer Tuesday evening I can practice myself Wed. I don't think I can ask my helper, who is a volunteer I haven't met, to come over Wed. I'm already feeling like this a big job for anyone to commit to. Any other tips? Boy, there is a lot to learn with all of this!!

PortlandLady -- I did practice first with them out of my home freezer then with ones chilled in dry ice.  My primary helper was stressed about the dry ice so I wanted to ease her mind about that part.  I don't think it is necessary to practice with the dry ice, just practice putting it on tightly and quickly.  They put it on backwards first time!  The caps are supposed to go into your freezer as soon as they arrive in the mail, then you move them to dry ice 3 hours before chemo.  Also one part we didn't get until we watched the video a second time is that you take it off like a helmet.  My hair was getting stuck in the velcro when we unsnapped the sides before taking it off, but all you do is the chin strap.  Come over to the thread PA just referenced and you will get lots of help from people who have done this successfully --- I am figuring this out along with you!

TwoHobbies -- My first cancer was 6 years ago and strongly hormone positive.  I started with Tamoxifen, then switched to Arimidex when the CYP2D6 test came out and I was found to be a poor metabolizer of Tamoxifen.  I stopped taking AI's after 5 years. There was some study that came out that said 10 years hormonal therapy is better than 5, but I'm not starting again.  My new cancer is not a recurrence but a new primary that is hormone negative so there is no need for me to start taking AI's again.

Mellie - I think your oncologist will do whatever you ask.  They are not going to say, suck it up and go to work!  Likewise they will not tell you if you want/need to work that you can't.  I worked through it before, and it was not bad, but in the end that company went bankrupt!  I promised myself if I ever had to do it again, I wouldn't be such a hero.  I currently work for the state where my job is secure and I have a great disabilty program, so I decided to focus on my physical and mental healing and take the time off.  I've been out of work since my surgery in May.  I also think that whether working is realistic depends on your job.  I may decide to go back to work after I see how I feel through chemo.  Right now I am enjoying not even knowing what is going on with work and having no other responsibility than taking care of myself and my son.

For those who have started chemo and are having a hard time, you need to know that the first time you are given a "loading dose" which is a STRONGER dose than you will get subsequent times.  When I did chemo before the first dose was always the worst, and now I know why!  It is possible that you may not feel as bad the next time.

Hannariggs, Both the first dose of AC and the first dose of TaxolI had severe fatigue that would hit me 1-2 days after my treatment and last for 2-3 days.  On the subsequent doses I remember waiting to feel as bad as the first time, and it never was that bad.  Of course this was 6 years ago so I might have blocked it all out!  I lost my eyebrows after Taxol.  Not a good look for me.  I don't recall that one drug was worse/better than the other but I think my onc said that people do better on Taxol than AC.   Any other side effects were related to the steriods.   Without the steriods you will have more side effects from chemo.  Compazine made me severely agitated and I will never take that evil drug again.  Kytril made me severely constipated that caused damage that took many months to heal.  I also had a bad taste in my mouth.  I recommend starting to use biotine toothpaste and mouthwash immediately.  Don't use alcohol based mouthwash.

I start on the 10th too.  We are going to be FINE, yes we are.

Have any of you had the BRCA gene test done?

My onco submitted blood work but said they are likely to say no to insurance coverage. My paternal grandmother was a survivor (dx in her mid 40s) and my father passed 14 years ago from pancreatic cancer.

I'm really feeling the need to know for my daughter's sake.

I have the BRCA1 gene mutation.. have known for a few years

Soriya123 - I hope my insurance (BCBS) will cover too!  I'm tempted to try and come out of pocket if necessary to check.

Honeybunny96 - Noticed you had a bilateral, was that due to BRCA1?  Personal question, what about your ovaries?

My onco said if I was positive they'd want to take my other breast and ovaries...

If you have a family history of breast cancer the insurance should cover it.  I'd argue with them if they tried to deny it.  My niece wanted to have herself tested since I have cancer and she was told insurance wouldn't cover it (she doesn't have breast cancer though) and that out of pocket it would be about $3,000.  That of course can vary from place to place.  I gave her the results of my test to reassure her that my cancer was negative for the gene.  I think every cancer patient deserves to know if their family members have a higher chance than others of getting this disease. 

Greetings!



I am having my final of 4 TC chemo tomorrow. I thought I would drop in here, since I can't sleep, and offer up my experience.



Steroids can make you stay awake! They didn't for my first two treatments, I slept like a baby. But for #3 and this final I have been up! I also think I made the mistake of drinking coffee late in the day. Oh well. And yes, you CAN gain weight on chemo, steroids make me hungry! Though taste buds are off!



Icing, I saw a few people ask. First I would like to say, ALWAYS check with your oncologist prior to taking any advice on these boards. We are all "just patients".

I ice my fingers using bags of ice and my toes using bags of veggies (same bags each chemo round, will be throwing them out after my final tomorrow!). I sit with soles of feet together one bag veggies between toes and one on either side of the tops of my toes. This is done when the start the Taxotere drip, and during that entire Taxotere drip. I also get ice chips to suck on and have an icee to drink (to avoid mouth sores). I use a cooler bag to transport my ice, frozen veggies and icee to my treatment.



Food, find out if your center provides lunch...you will most likely be there a number of hours. Mine does not, so I throw in some protein (healing powers!) into my cooler bag and maybe some pretzels or other finger food.



Water, water , water...hydrate, if you can't tolerate water find something else you can. Drink plenty before getting to the treatment center, helps them to find your veins if yOU are well hydrated. Also the liquid will help to rid your body of the toxins. You CAN. Get up and use the bathroom during treatment. The only time you cannot is when they do your first drip of taxotere (checking for reactions the first 5-10 minutes). Don't know about the other chemo a. Just tell your nurses you need a warning for when you MUST stay in your chip air so you can go use the bathroom accordingly. Continue to drink plenty when you get home and for the following days.



Bathroom at home. I start stool softeners day of chemo, and continue them. Next day I add Miralax to my breakfast water, and do that for more days too! When I stop all my nausea meds I stop these meds too. That is just me. I have not gotten constipated.

I also have baby wipes on hand to wipe myself after using the bathroom those first 3 -4 days. You are passing toxins, I don't need "issues" down there!



Food...nothing tastes "right" as you would think it should. Coffee...eeeew! I don't drink coffee for the first week....BUT I found a international delight Mocha coffee drink in a half gallon at the supermarket that tastes incredible. I throw it in the blender and add ice. YUM! (Higher calories though, here comes weight gain! I also like the McDonald's chocolate shakes and the McDouble (but NOT a regular cheeseburger from McDonalds!-go figure!). I don't eat those on a normal day! And I LOVE my watermelon, cold, tasty and soothing. Also iced tea!



Indigestion...mine started as soon as I got home from chemo...despite the meds given in IV prior to chemo. I went and purchased Prilosec and .tums. Between the two it kept me good.



I have my meds to take in a bowl on my kitchen table, and have a check off list on my kitchen cabinet, so I remember what i took. Also helped when I was in bed and didn't want to get up, hubb could figure out what to bring me.

Additional, "back up" meds are in a shoebox on my coffee table..Benadryl, nausea meds, thermometer...I have only needed the nausea meds. I also advise using an empty medicine bottle or other container to throw some nausea meds and tums into when out running around.



Claritin for the Neulasta shot. I have read that it can help to avoid the bone pain associated with the Neulasta shot. My onc never heard of it but did not discourage me trying. The nurse said I am her only patient that can tolerate the full amount of the Neulasta shot (they can decrease the amount given if you get bad bone pain). I think it is because of the Claritan 24 one a day pill. I take it the morning of the Neulasta shot and one a day for the next 7 days.



Side effects, I will look for and post a sheet of side effects to record/note when on chemo. It comes in handy and tells you when to call your onc. Also handy to refer to when you go back to next chemo. It is from the American cancer society.



Not feeling good! Call your onc! Don't wait, they are getting paid to serve! Weekends, holidays, midnights....call! Don't "wait it out" there are so many meds that can be prescribed to help you feel better.



Blood pressure, blood draws and IV. These things should not be done on the arm where you had lymph nodes removed. It can increase the risk of lymphedema....look it up on these boards. Be sure to advocate for yourself!



IV...if you feel discomfort in your vein, or anywhere, when getting your pre meds or chemo, speak up! They had to use a hand vein during one of my rounds and I had burning and pain during Benadryl drip...I was so happy I spoke up, they did something and made it better. Also had other issues that day and they fixed it. Didn't have any problems my other two times!



Tiredness...I was tired on day 4? (Day 1 being chemo day). I napped, and then napped some more. You really need to GET UP AND MOVE...even walking in the house, housework, walk down the street....it actually takes to out of the tired fog! I was back to the gym by day 6....I am NOT a gym rat, just like my one machine. Admittedly I took it slower, I was afraid...then I worked my way back up....it IS doable. They say the effects of chemo are cumulative. I didn't really feel that til chemo #3, but my vitamin d is down and so are my red blood cell counts...so that can be the reason...I am still getting up and going though!



Chemo brain..I have NOT had any major issues with this. Thankfully!



I apologize for the typos, I'm sure there are many and iPad makes up its own words too, I am too tired to go back and fix.



Please remember, you CAN do this. Many have gone before you and are here to talk about it. One step at a time.

Pat

Wow, Pattysmiles! Thanks SO much for the insight and advice I've already got my Claritin, Senecot, and Miralax ready!



Hugs to you, Lesmds, I'm so sorry about your mom and the anniversary thing I was dx on my 26th anniversary. Hope your second round doesn't leave you feeling so rotten!