February 2012 Chemo
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mthrdee, Try not to worry, I know, easier said than done. I also worried about all of the side effects you read about, but actually got very few of them. The couple days of feeling nauseous and the taste changes were my worst side effects. I used cold caps for my hair, so didn't have that side effect to worry about. It wasn't a picnic, but it was not as bad as I had feared. Good Luck!0
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Gritgirl
You are spot on with the joys in life. I'm praying for great results or you. Thanks for your wisdom.
rachelvk
Awesome tips on the necessaries in the chemo bag. Going to hit the store today and get that done. Never been a big med taker my whole life until now. Lucky if I had a bottle of tylenol in the house at any given time. I'll be taking whatever gets me through though for sure.
Aussiekate
I can only hope to look at chic as you do! You look fab!!
Gayle56
My hair is only shoulder length but I never thought about having the weight of it be uncomfortable. Is it like where you've had a ponytail in too long?? Methinks I will too have it cut quite short in anticipation. Less hair clogging the drain I suppose when it does start to really come out in the shower.
Firstcall
I never did welcome you to this crappy club LOL! Your insights are going to be really appreciated.
jltnhm
I echo that it hurt more where the central line went in right after placement. Particularly when I laughed. I don't even realize its there now with the exception of one little suture sticking out.
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Sitting here with the first cocktail going in. Feel pretty good, but sleepy. Port was put in on Monday. I also experienced the neck and throat pain and the pulling. But much better now. Glad I did the port, wouldn't want all the extra needle sticks. Will let you know how the following days go.
Thanks for the chemo bag tips. I will be using them.
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Hi gritgirl I feel the same hehe. Have slept non stop since Friday but have got up this afternoon. This is only 2nd of 6 or 8 and I'm thinking how am I going to cope. My lump under my arm pit is smaller and I can't feel the one on my boob now. Onco said after 3rd chemo she would take a scan, not sure what it is called. Have been to the loo yipeeee.
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Hi, I'm new to the forum. I had BLM with BL lat flap sx in january 2012. Still recovering from surgery. Still have 2 drains in (they come out in 2 days) Now I start chemo (TCH) x 6 rounds this month. Port goes in this next week. Don't know what to expect. Hope to work while doing chemo. We both will get through this, your not alone. I'm trying to keep my sense of humor through all of this and focus on a trip in November!
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Hi Laura5, Did the coldcaps work? I've heard mixed reviews. Not looking forward to losing my hair. Hoping for the best. I bought 4 male OR caps and bandanas to wear at work and maybe around town. Not tooo fond of the wig idea. Anyone else with great ideas I have short hair normally.
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Corkins, I can't speak for all cold caps, but the ones I used - Penguin Cold Caps worked. This brand has a 90% + success rate. I went through 6 rounds of TCH and kept all of my hair.0
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Just returned from MO. Failed test for WBC. Had shot today to stimulate bone marrow, another tomorrow and again on Friday. Will be having neulasta after all following tx. Somehow "belly shots" sound like they should be more fun. My sense of humor is getting a little wacked out. Have noticed a little extra hair around the house, thinking it could be the dog but its probably me. Oh well. I'm at day 8 and I feel really good. Hope the blood responds quickly, I'm not going for any delays. My very first grandbaby is on the way and I need to well by then.
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Thanks I'll have to look in to it. Sounds like we had the same chemo so that's encouraging.
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OMG. Had my port put in this morning. I feel like I have the worst upper back/neck/shoulder ache ever. Took 2 tylenol when I got home...took a percoset 90 minutes later...took a second percoset an hour after that. Ugh...I don't remember my lumpectomy hurting this bad. I still have lots of hydrocodone from the lumpectomy and I may try that later in the day if this doesn't subside. I did not expect this at all.
Otherwise the surgery went very well. Did not take long at all. And they just did the "light" anesthesia so I'm not having to deal with the after affects of a general, like after the lumpectomy.
Picked up my chemo meds after the port surgery...the kitchen is starting to look like a pharmacy. I need a better way to organize the medications I am using on a regular basis.
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The little joys in life.....
There are many very nice and considerate people out there.
Last night when I arrived home from work, which was on the late side....I found a bunch of colored paper, cut in the shape of hearts, and covering my front door. Each had a special note of cheer, all in childrens handwriting, and none had a signature. And there was also a tray of goodies.
I am grateful for the many kindnesses I have received throughout this.
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Hi everyone, i have started chemo Feb 1 .3 more AC left. I try to be strong , today i feel much better. Couple days i just slept all days. No nausea what is good.
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Christina0001
I had the same effect from the port insertion on Monday. Like you, felt the pain was worse than the Lumpectomy. However, it is better today. Had the first tx and was so happy to have it. They sprayed some numbing stuff on it before they inserted. Didn't feel it at all.
It is now 6 hours since tx. I was exhausted and took a long nap. I will be anxious to see how sleep goes tonight.
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firstcall,I agree, there are some good people out there. Part of the silver lining.
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Hi everyone!
ewesty, I'm surprised that you are being advised to get radiation. My breast surgeon said if I opted for lumpectomy (both breasts) I would need radiation and chemo, but if I opted for the bilateral mastectomy, no radiation, still chemo for prevention of reccurrence. I know everyone is different, but I would question this more to find out why.
mthrdee, I know how you feel. I was very anxious about my first treatment. I was afraid that I would start shaking or crying when the nurse started the infusion. I spoke to my oncologist and told her I was very nervous and she gave me some xanax to take before treatment. It really helped me be calmer on that day, but I didn't feel out of it. The infusion went very smoothly, no problems at all. I'm not advising anyone to take anything, but speak to your doctor before you go. It really helped me.
I'm on day 10 after my first tx. I felt pretty good today. Although I went out and did some errands and on the way home my hands and feet really started to hurt. They felt swollen and hot. I put ice on them when I got home which seemed to help. My family keeps saying how great my new short hair (boy short) looks, so I tell them don't get used to it! My scalp is tingling and feels like I have a bit of sunburn on it. Like when you sunburn the part in your hair? So I guess something is cooking up there. I just finished cooking and cleaning up dinner and I'm done for the day! Wig shopping with my sister tomorrow. She is insistant, I'm hesitant, but am going to make her feel better. She's the best. She's really my sister in law, but she was 10 when I got married and she is more of a sister than an in law!
Wig report tomorrow!
Judy
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today was chemo school- got my cocktail mix- will be AC-most likely dose dense-not sure -my MO wasn't in house today. will get PICC line tomorrow -my choice- and most likely start tx on monday with neulasta tuesday. not that i WANT to be going thru any of this but i am anxious to get started on tx to move past this....
good news today was that my iron level is actually on the high side-which will surprise my MO-his comment to me was that gastric bypass patients are "always " low after about 5 years..i'm almost 8 years out! whoooo hoooooooooo! SOMETHING in this ol bod is working right!!!!!
scrips called in to pharmacy for comapzine and decadron-does that sound right?
sunday my granddaughter and i are going shopping for big earrings! that will help us to re-bond!
thinking of you all and hoping for good days !
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Firstcall- I have been absolutely amazed at some of the things people have done for me and my family during this time. It's definitely been an eye opener and I feel very blessed to have wonderful friends and family.
Ewesty and Judy... I'm not surprised about the grey area of radiation, I'm in the same boat. My BS when I asked him about radiation (I had BMX) said "no, there's nothing to radiate! I got great margins, no nodal involvement, no vascular invasion...no need for radiation" Then when I asked my MO, she said "I would say no, your Oncotype score is so low, and you're doing chemotherapy, but, I'm not a radiological oncologist, and you have the right to get an opinion from an RO".
So...I then met with two RO's and both did recommend radiation. Their reasoning is: my tumor was on the larger side, and radiating at least the incision site would lower my LOCAL recurrance rate from 15% over ten years to 5%... both explained that the Oncotype score relates to distant recurrance, not local. And both noted that all along I've chosen the most aggressive treatment, BMX when I could have tried lumpectomy or UMX, chemo when I could have declined. The more senior MO said, "I'd like to see you finish the bases and agree to radiate the incision site"... So, it's a decision I need to make too, in the next month or so.
I guess under the incision site (from what I'm reading) is the most likely place for local recurrance.0 -
I guess my take away too: I really like my BS and my PS... But the more I think about it, it makes more sense to talk to an MO about chemo and a RO about radiation, then weigh all your options.
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-hello ladies, I start chem this month as well, AC first then BMX then taxol w/herceptin.
I was told not to let anything but chemo be used in the port, let them use a vein for bloodwork, this is froman experienced chemo patient, you do not want to risk any kind of infection. I felt very rusehed after first being DX, plus being in a fog. I took my husband with me to appointments so he got all that was said. I have since been going at a normal pace, there really is no reason to rush, but don't wait months either. Get all the info you need to make your descision. I actually made mine today after getting a second opinion. All I had to do is decide if I wanted to go with the recomended chemo route first or have surgery first, got the pros for going either way. We decided to do chemo first. I get the port and sentinel node biopsy on the 17th, then the following thurs start chemo. I celebrated by buying 2 scarves and 2 hats
. John Hopkins had a great store there, if I can find the time before all this starts I would like to go there and get a wig as well, just not sure I can get back there. I have not jumped on the radiatioin train, I will do all I can to not have it, just won't know till after surgery wich won't be till July/Aug time frame. 0 -
ok what does one do when they use 'bump' or should I be asking how does one bump?
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Jap62 I hope and pray all the best for you. Sounds like you did your research and are prepared.
My MO and my chemo nurse not only agreed that I needed a port but that it would be the best thing possible for blood draws. In fact, my MO ordered a Power Port which is specifically made so that CAT scans, MRIs and such down the road, which would involve IV contrast and such, can be inserted in the port rather than techs and nurses attempting to start IVs.
Although we all have breast cancer, our individual situations can be so different.
I would like to avoid radiation also. It is indicated based on all my stats. I will have to see. My chemo is coming post surgery, post sentinel node and axillary excision, post DIEP reconstruction which occurred all in one very long surgery 4 weeks ago.
Blessings,
Diana
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It's so interesting reading the different processes we're all going through. Diana, the plan for me had been to have immediate DIEP reconstruction after my bilateral MX, but because I ended up having node involvement my PS wouldn't do it since she figured I would have to have chemo and rad. I have expanders in right now. Chemo initially was a question because I had a low oncotype score but I decided to go forward with it. On radiation, I got 2 no recommendations and 1 yes so I've opted to not have it.
And Jap62, bump refers to when someone posts on a board to move it up to an active discussion. If no one has posted to a board for a while, it drops way down on the discussions list.0 -
Well just when I was quite happy with how things were going for me, I got the call from the onc nurses today to say my WBC was way too low to proceed with chemo #2 tomorrow. I mean as much as I'd rather not be doing this at all, I want to stay on track and move forward cause that means the end line gets that little bit closer. But no, I've now got to have bloods taken again on Wednesday to see if I will be good to go next Friday.
So I'm not a happy camper at the moment
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Talking about the goodness of people. I was in hospital over the new year due to a breast infection courtesy of MRSA super bug and a group of people who knew my daughter, but not me, cooked and delivered meals for us for a week. It was so humbling knowing that total strangers had such kind and generous hearts.
I am paying it forward in any way I can when the opportunity arises.
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I just found some great resource for information and support:
List side effects and how to deal with them Provides a 24 hour support hotline where they can match you up with a peer who has been there done thatAlso has a hotline and peer matching program. They also have events that they run, including a conference for women below 40 with breast cancer and those living with metastastic breast cancer.
And in terms of the dog (I love the comment about the hair being the dog's or yours - can't remember who said this). Chemo comes out in our urine, so someone told me to keep the toilet lid down for the family pets so they don't go through chemo too. :-)
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Aussiekate - sorry that your chemo was delayed. Praying your WBC goes up so that you can continue on this journey.
What a great encouragement it is when we are surrounded with love and practical expressions of care from those we know and/or those who know and love our loved ones and even 'perfect' strangers. I never knew how important all those meals were and would be until this.
Ymac - I know .. such different experiences and different courses or orders of treatments. You really just have to educate yourself and then trust your docs because what needs to be done for you and in what order may be entirely different from the next gal. Kinda reminds me of my firstborn. He hated belly time. He was right on track when it came to getting up on his hands and knees, but he wouldn't crawl, He loved being up, going and ambulatory and at 7 months he was 'walking' all over the place holding our hands and everywhere around the house where he could hold on to something ... a couch, table, etc. Oh my goodness did I ever get lectures about making him stay on his belly and howl because he needed to crawl. My pediatrician told me to not stress about it (myself or my son) that eventually my son WOULD crawl and that it was important to his development but it didn't matter when it occurred. So ... after he walked totally on his own ... 11 months ... guess what? He started crawling too. Everything came together. And NO ONE who didn't know us then had any idea that he wasn't a crawler first. And crawling before walking didn't hurt him in his educational pursuits (lol). Isn't it funny what we do to ourselves and our little ones trying to follow a 'standard' or 'norm' that also includes exceptions :-) Okay ... stepping down off my memory lane soap box. You and I are going to be just fine ... no matter the difference in our order!!!
gritgirl - I too loved that hair of the dog or hair of me post. Someone step forward and remind us who you are. Unfortunately we do not have a dog ... only parakeets ... so I will not be able to 'blame the dogs' or the birds ;-) Love you adding all the links. Oh and the urine one? I just read the other night that my urine will turn reddish with one of my chemo drugs and that it could possibly stain my clothes. Yuck. And then I was wondering will I really be able to distinguish the 'red chemo urine' from 'first menstrual bleeding' etc. I would hope so. But one drug caution said 'contact your doctor about unusual changes in your urine' and the other drug caution said 'expect changes in your urine as a side-effect'. I just had to LOL. I know my chemo nurse and MO will help me navigate this .. but it was one more of those kind of oxymoronic things that seem to occur with this new phase of my life ;-)
Hugs for you today!
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I appreciate everyones encouragement, and sharing your experiences. Today I meet with my MO to work out the details of my chemo. I don't know which combination he will recommend yet. It seems like most of you are ahead of me on the chemo train, so I'm learning from you.
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Myleftboob: My whole scalp was sore and I could barely touch it. Having it cut really reduced the discomfort. The hair is still falling out so we will see how long the rest of it lasts. I wore a scarf for the first time on Wednesday.
Treatment #2 has definitely been more challenging than the first. The next day I started to run a fever and pretty much put me out of commission for the rest of the week. My MO wasn't too concerned as my blood counts were good on Tuesday. He said it was either a reaction to the chemo or I picked up a virus. Fever has been down since yesterday afternoon. I am more nauseous this time and achy and a general yucky feeling. I have had to stay home from work, didn't want to risk picking up anything else from my students.
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Hi guys, I am from Jan. group too. I am going for 3rd ac on feb 23.
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I am still not sure if its the dog or me although he was highly offended that I accused him online. He is very sensitive about his hair. Went to onc today for my 3rd shot for my WBC and a visit with the PA. She was a little concerned that my blood pressure is so low. It has been high my entire life. Guess that is a good side effect. She also passed on a tip that some of her patients are having good luck treating mouth sores by drinking Dr. Pepper. That is one I'm going to try because that oilive oil thing is not working for me. I'm not sure I will even be able to cook with it again. The smell puts me over the edge. Glad everyone seems to being doing OK today. Now its nap time
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