June 2011 A/C & T Groupies Unite!
Comments
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Justme, I know how you are feeling!!! One day at a time, one foot in front of the other. I dread heading to that friggin chair, knowing what's in store. Keep fighting!
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soo glad we have each other : )
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Just checking in to see how everyone is doing this weekend. I'm having my usual bit of joint achiness, and my ears are plugged again. I definitely notice, now, that it is on my port side, for whatever that is worth. And I am noticing the fatigue even more, but I also realize that I am on the backside of what I felt was the worst treatment I would have to endure.
I've had my BMX, have a DIEP consult next week, and another RO consult the following week. And most importantly, I have a PET/CT scan on the 11th which I hope will show nothing...bloody nothing!!!
I think that PET/CT scan will serve as the date for my "cancerversary." There is lots of discussion about what date to use, from the first diagnosis, to the first surgery, to whatever other milestone event you want to use. For me, a clean PET would be my personal marker.
Hope everyone is enjoying their weekend!
Michelle
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I'm not sure I want a cancerversary. I know the date I was diagnosed. I know my MBX date (which is another significant date for me on my personal journey...and I found a great deal of comfort in it). I know my chemo start and end dates. Maybe I'll change my mind later.
I've got some post treatment let down. Have I already talked about it? I'm trying to focus on my next goal of recon revision surgery in Dec. My mind keeps wandering to wanting my next blood test in Dec. At my last appt my onc told me my CA 27-29 tumor markers went up during chemo when they generally go down. I had no idea I was being tested for this and I didn't even know what it was. She told me not to worry, as it's a tool. My understanding is inflammation in general can increase the number. I didn't ask what my numbers were and right now I don't want to know until I get the next number. I can't 'do' anything about it right now anyway.
So for now I'm focusing on getting healthy for my next surgery. I was able to start tracking my calories again on Wed, exactly 2 weeks PFC. I've stayed on track, too! I know, only a few days, but I'd give up before I was done with 2 days in the past. I've got lots more incentive now! I feel better already, less bloat. I have noticed I need to sleep more. I did start Tamoxifen on Wed as well. I am terrified of gaining more, as I have needed to drop weight for the past few years. I did gain 10 pounds on chemo, but those were the 10 pounds I lost after surgery. I can't complain.
On Thurs my PT gave me some more stretching and strengthening exercises. It must have been too much for me, as one of my lower back muscles flared up. I think I scared her, as this happened while I was with her. So the chemo, weakness from being more sedentary and my hypermobile spine are to blame. I want to do more, but my body is not cooperating just yet. Still need to take it one day at a time.
Hang in there everyone! Michelle, your daughter is awesome and thanks for sharing your pics.
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Its been a particularly lovely autumn weekend and we had lots of kids activities... so imagine my dissapointment when I woke up and felt awful yesterday. My mouth had sores, I could feel them in my nose too the aches in my bones were bad and I thought what the heck?!!!!! I only have one more taxol to go- please leave me alone - you effing chemo!!
This morning I woke up better because I was able to get some meds for the sores and got something different for the pain. The fact remains the last treatment will be Tuesday and now I realize that it may get pretty hard - I took it for granted because I was almost done I will be prepared at least for a more worse case scenario and expect that. I can manage this crap for one more round... Please God lest me manage this for one more round!
L
laura
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laura - good luck on your last chemo. I was at that point once and it felt great....
I finished my first taxol - and just wondering if the following are normal SE.....???
1. It feels like my legs are giving out - if I stand for a period of time, my legs just turn to jelly and want to give out.
2. Don't know how to say this nicely - my nostrals feel like glue. I will press one side to do breathing exercises and it stays stuck - like the snot had turned into glue and it is sticking together.
3 - dry hands and skin- the skin is so dry it is cracking no matter how much moisterizer I pour on it.....
Other than that - I feel peachy... (sarcasm) And, yes, I need to lose weight too.
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Laura - you can do it, girl! Just one more!!! Geez, I didn't think Taxol would give you mouth sores.
Pebee - yep, I've had that "I need to sit down right this second" feeling! I am sniffly all the time and this morning, not only was I all stuffed up, but I was almost totally deaf in my right ear. I used 12 hour nose spray and my hearing eventually came back. But it was a little scary for a few hours. My skin has held up fairly well and...well...I gained no weight during chemo. I tried, really I did. And I've never been one who couldn't gain weight. But in the end I think I lost two pounds.
Thanks, Paula, my daughter IS awesome! Honestly, all of my kids have been awesome through this whole ordeal.
Now I need to start rebuilding my strength - I am a bit of a weakling at this point and I would like to be ready to walk the 5k Komen event on 10/30...or at least half of it!
Michelle
My scalp is covered in peach fuzz, so now I can't help but be on "hair watch." I have 3 colored eyelashes and about the same number of eyebrow hairs, but quite a crop of almost clear eyebrow hairs and short little clear eyelashes.
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pebee- yes some of your side effects are normal..I never had the "nose" issue, but the weakness in the legs is something I experienced and still do - I've done 2 of 4 rounds of Taxol. For me day 2-5 are the worst for bone/joint/muscle pains. I have noticed my legs are not as strong as they were before the Taxol either, but I figure it is just "cumulative" of the 6 rounds of chemo I've done.Also, the dry hands and cracking,peeling is what I have experienced too. I use a Curel lotion that seems to help, but I have to reapply several times a day. Other than that, I'm "peachy"too with you! Just hang in there..I take one day at a time..
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Ralston - To answer your question about studies on complete hysterectomy or tubes/ovaries removed, I don't have any studies. My oncologist shared his opinion (have the surgery), but said that the decision is ultimately up to me & my gynecologist. Now that I'm done w/ chemo, I'm learning that my MO is very, well, he's in it for the money I'm sorry to say. He does what he does & nothing more. Anything beyond the chemo he is not willing to commit to or do anything more. Anyway, I'm getting off track. After discussing the surgery with my gynecologist, who I love & have been her patient for 15 years, we decided that having the surgery is the best option for me because ovarian & uterine cancer runs in my family. My sister (who also has breast cancer right now) had a partial hysterectomy in 1995 because of a suspicious ovarian mass. The pathology following the surgery confirmed ovarian cancer AND uterine cancer. So, is the surgery necessary? Probably not. It's definitely an elective procedure, but I'm really feeling the need to do everything in my power to make this my ONLY experience with cancer.
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Michelle - love the pics!
Everyone who's done with chemo - CONGRATS!
Everyone who is knocking on the door of the last chemo - keep your chins up & your eyes on the light at the end of that tunnel!
We should plan a get together in a centrally located city to celebrate KICKING CANCER'S BUTT!
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that would be nice
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I was done on Tuesday! rang the bell and got my appt for my RO on 10/14. onwards with faith and hope. I wrote about the last day on my blog if anyone has been following.
Im so thankful for this thread and each one who shares on it.
Laura
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Congrats Laura! It is such a good feeling to be done with chemo. Onward indeed.
How is everyone else? I'm 3 weeks PFC now. The neuropathy in my feet have diminished, but a little is still there. The two weeks after were still tough. It was nice to get past that 2 week mark, to finally feel the strength coming back. I still need to take it slow and steady and I've been able to up my walking. I started tamoxifen a week ago.
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Hi Paula - thank you for the hope... my neuropathy is really, really bad right now, and I have two months before PFC... a
((sign)
Still have RO after this.
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Congrats, Laura!!! I'm on the count down. 4 more abraxane/herceptin. I was told I had I start triple dose herceptin the following week, every three weeks until AUGUST. UGH! My swelling and nail pain was not as bad this week, but my scalp won't stop itching! I've had nasty nose bleeds everyday, and my platelets are normal.
Spent 3 days cleaning my DD bedroom, and still not finished. That's what happens when it doesn't get cleaned for months. She had STUFF stuffed everywhere! I filled 5 bags with clothes, shoes, and dresses. Now for the stuffed animals... Do I give her a choice to keep some, or just get rid of them?!?! 3 tall kitchen bags filled with them!
Hope everyone is doing well.
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Hi everyone! I am 3 weeks PFC today and a lot of the SEs are fading. Neuropathy and bone pains are intermittent and milder.
Saw my surgeon today and I am green-lighted for lumpectomy and SNB on 10/19. The chemo shrank my tumor from about 4.3 x 3.5 x 4 cm in May to about 3.5 x 1.5 x 1.5 cm now. Still have some "suspicious" nodes on the MRI but those too seem to have shrunk and they are only a few. So the chemo did what it was supposed to do. I will have probably 6 weeks of rads, starting no sooner than 2 weeks after surgery. I should be done by Christmas - what a gift indeed!
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Hi ladies! Yesterday was my 1 week PFC "anniversary" and I was sick and had a fever! So it turns out that I caught a virus from my granddaughter. I had shared water and popcorn with her at a movie on Saturday and she threw up Saturday night. She had been kinda grumpy all day so she probably wasn't feeling good. Luckily, I woke up this morning fully recovered and was able to take my mom and aunt out for lunch and then to visit their brother. Even though I wasn't feeling well, I did go to Boston for my DIEP consult. Bottom line, they won't do it until 6 months after rads are done - which means next June. Good news is that I can have a nice set of small B cups. When I get finished, it will be 2 1/2 years long, this breast cancer battle.
Rose - could the itchy scalp be the start of new hair growth? Sorry about the nasty nosebleeds, that is an awful SE that I fortunately did not experience. As for your daughter's stuffed animal collection, I would have her select one bag of her favorites and the rest can be donated. When we moved from MO, we gave stuffed animals to the local police department. They put them in every squad car for when they encounter rough situations where children are involved. My girls were long gone from home but some of their stuff lingered on until the big move.
Kat - good news that you can get on with the lumpectomy and SNB. Trust me, after chemo, the lumpectomy will be a cakewalk!
Pebee - are you taking any supplements to help avoid neuropathy? I have had very little neuropathy and I feel reasonably sure that it will fade away over time.
Laura - congrats on ringing the bell! Woohoo!
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No hair growth. It's still falling out! I wish the last bit would fall out because it looks goofey!
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I've got to vent, ladies! You recall my dismay with my MO over him not writing me a note for work? Well, I went for my port flush yesterday. The secretary called me up to the desk & handed me a piece of paper. She said it had been sitting in a drawer & she wondered if it was something I needed. Take a wild guess what it was? Yep. A note writing me off from work for the 90 days...and it was dated 9/9/11! After all the BS I had to go through to get this time off taken care of only to learn that he had written the note after all & NOONE in the office bothered to call to tell me there was a paper for me. In-freggin-credible!
And listen to this. Tell me if you think this is suspicious...I had my port flush & my 4 week follow-up appt. scheduled for the same day (yesterday). The secretary called me about 2 weeks ago to tell me that my insurance won't allow them to do the port flush & the doctor's follow-up on the same day, so the follow-up had to be rescheduled for today. What??? Sounds to me like he's wanting to bill for 2 different dates of service so he can pocket more income.
Sorry...the negativity will end now.
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BobbieJo, vent away! That is ridiculous!!
And yes... that billing thing might be suspicious...
So sorry to hear it all! But otherwise, how are you doing?
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BobbieJo - call your insurance company and find out the real answer. Perhaps there is a billing code that will work. Do you have a nurse navigator provided by your insurance company?
This is the place to vent!
Hope you are doing well!
Michelle
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I would call the insurance company- I did that this week when one of my bills was wrong. I had teh provider, the insurance company, and me on the phone. The insurance company basically told the provider that they were full of BS.
At my onc office, I see lots of women come in, with hair so I am assuming it is some sort of followup. They get flushed and then off to the doc.
He just wants two copays. Don't let him do that = and if possible, get your medical notes, and reports and go somewhere for second opinions. I know you would have to travel - make it a mini vacation.
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BobbieJo - That whole thing sounds leaky and suspicious from the note in the drawer to the need for separate appointments. The note in the drawer story would be good enough for me to switch.
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I would call the insurance company, then report him. Damn, what is wrong with people???? BobbieJo, you need to research reputable doctors in your area. It may be worth taking a day trip to a compassionate doctor once every so many weeks versus putting up with him! I will help you research the doctors and their backgrounds. What is the closest large city in your area? You can even start a new thread to ask for names of doctors from other woman who have a good MO. Ugh! I wanted to kick his butt when he wouldn't write the note. Now I want to scream at their corrupt billing department.
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I will be starting AC and then T on Oct 18
Reading all the tips and info - mucho thanks.
Not sure what to expect or how I will react makes it scary and I am dreading it.
Can you all give me a run down of the meds I need to have on hand
I do have the prescripts for nausa. When do you take these, before or after the treatment to head it off ??? or when needed ?
Claritin for after the shots ? (do you take before ???)
Did I hear some one uses a patch ?
Xannax or Ativan ?
And various other meds for consitpation or what ever.
Pepcid or Priolsec ?
What else ????
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Tappy - it's scary because you don't know what to expect. You'll be surprised after you get through the first treatment that it will have seemed much less scary than you thought it would be. Fear of the unknown is always the worst; but then, you've probably heard that a time or two by now.
Let me address your questions as best I can:
You have scripts for nausea - get those filled so that you have them on hand when you get home from your first treatment. They are for break-through nausea, which may happen in those first few days afterwards. You will receive some pre-meds the day of treatment. I got Decadron, Aloxi (IV) and Emend an hour before getting my first chemo infusion. I also received an hour of IV hydration. You will probably get something very similar. Some docs use IV Zofran instead of the Aloxi. If you get Emend, you will have a packet with two more pills to take for the following two mornings. My anti-nausea meds were Compazine and Ativan. I rarely needed them.
Yes, I also wore a scopolamine patch. I applied it the morning of treatment and then wore it for three or four more days, depending on how I was feeling. It will make you very thirsty, which means you will drink more liquids. That's not a bad thing as it keeps you well hydrated, most important.
I took Claritin to ward off bone pain from the Neulasta shot. I took one the morning I was receiving the shot and for three mornings afterwards. It worked for me. And you can just get the generic version of plain Claritin, you don't need the "D" version.
As I mentioned before, I had a script for Ativan. I tried using it for sleep and I didn't think it did much to help me there. I had a couple of times when I took it in the afternoon because I was feeling a little nauseous and it helped me take a nap once or twice. Some people say it knocks them out.
I never had a problem with constipation or diarrhea. Some people do have issues and I think it's an individual thing. I had bought stool softeners and anti-diarrheal meds and never opened the bottle. If you use pain meds, you might need a softener.
After my first AC treatment, I started using generic Prilosec at night. I noticed the heartburn and my esophagus was irritated. It helped a lot. When I started Taxol, I added generic Pepcid. I received IV Pepcid as a pre-med before Taxol and I asked about that. Why one over the other? Apparently, we have different acid producers (proton pumpers) and Taxol irritates the one that responds best to Pepcid. So I took both of them during Taxol.
I had an immediate problem with mouth sores (herpes simplex) after the first treatment. My doctor wrote a script for generic Valtrex. I will stay on it until I am six months past radiation. My body happens to like to produce cold sores when it is stressed or fighting off a virus. So the Valtrex took care of the problem and I never had any problem with mouth sores afterwards.
Many people swear by Biotene products - toothpaste and mouthwash. I don't like the taste of it and now there are several mouthwashes that are alcohol-free and help soothe a dry mouth. I liked ACT's version the best. I used my usual toothpaste without a problem.
What else? Whatever makes you comfortable. You will experience dry mouth and I just kept drinking. I don't leave the house, even now, without a container full of ice water. Some people like gum, hard candies, mints, whatever.
There is a discussion thread for October 2011 chemo gals. I recommend you check that out...you'll have the benefit of the experiences of everyone who has started in October so you can learn from what they have already gone through.
And don't forget...you will have a major hair fallout starting sometime around day 17. You can count on it. You may not lose every strand on your head, but it will happen. You'll know it's coming when you have that "my ponytail is too tight" feeling in your scalp. It's best to be prepared with head coverings. You can get a free one compliments of the lovely folks at Franceluxe:
http://www.goodwishesscarves.org/
They will send your selected covering along with a card signed by all their employees. It's a beautiful act of kindness.
And last but not least, find out when the American Cancer Society is offering the "Look Good Feel Better" program. It's a wonderful session where you will get lots of nice cosmetics, instructions on how to use them, and usually a list of wig banks where you can get a free, sometimes brand new, wig. The session is free, it's run by volunteers at local hospitals and oncology centers, and it is not to be missed.
If you want to "see" actual pictures of what it looks like to be sitting in the chemo chair, I have a blog with pictures that will give you a good idea of what it's like.
www.mch-breastcancer.blogspot.com
You'll have to look back at my posts to the middle of June - that is when I started. But it will help you see what to expect, and it may relieve a few fears.
Good luck to you as you go kick cancer's butt!
Michelle
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Thank you so much for the info - it is greatly appreciated, more than you know.
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The bottom of my foot has become painful, al most like a reumatoid arthritic constant pain. Is this Neuropathy? I never felt tingling or anything like that. I woke up with this pain today. It has been constant and now it seem it has travel to my ankle. I'm taking vitamins, glutamine, etc. What are you taking for the pain?
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Ralston=
Vicodin... It could be neuropathy- my foot feels like it is in flames. I would check with the doc- there are pills you can take.
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I need to vent a little - why is that other people - ie friends and family or in general, have NO CLUE what we are going through fighting breast cancer!?!? I get so frustrated and feel alone because they either don't understand or just don't care. I guess just because everyone says "I look great", means I'm on my own!? That I'm not struggling with side effects, pain or the emotional roller-coaster we're on?! I'm just trying to survive! Survive the diagnosis, the surgery(ies),all the tests/needles (which I'm phobic of) - I am just trying to survive the best what I know how - trying to work, keep my mind active and being as positive as I can (which fails at times) I'm fighting for my life now, so that I can see my children grow up! I want to live another 30+ years. Can't people see that? Sorry, to sound insensitive, but at times living THRU breast cancer gets so overwhelming and discouraging! Thanks for lettting me get that off my chest!
. I know I can get through this, I only have one more chemotherapy round to go, then will take the others steps, revision surgery, nipple re-creation, nipple tattooing,begin taking the Tamoxifen. Not sure how many tests come after chemo, but can't wait for the "all clear" cancer free diagnosis! Thoughts and prayers to all of you on this forum - I know we can help each other beat this!
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