Calling all TNs
Comments
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Ellipses: For prevention of neuropathy (no guarantees here) Vit B6 200 mg and Glutamine 1000 mg. Hope this helps!
I have had a busy week and having a rough one too. Congrats on those finishing chemo and for those in the middle of it: Know that there is light at the end of the tunnel.
Happy Friday!
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What is bolus?
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I've been at the beach all week teaching beach ecology. Tomorrow we sail. I'm feeling.... water logged!
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What is Bolus?: A specific thickness of bolus (it's like a sillicone membrane) can be applied to the skin to alter the dose received at depth in the tissue and on the skin surface. A typical example of this is the application of a defined thickness of bolus to a chest wall for post-mastectomy chest wall treatment, to increase the skin dose. The thickness of bolus applied is dependent on the skin dose required and the angle of incidence of the treatment beams.
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A bolus is just a dose of some sort of drug, it is usually an injection (ie. injection bolus very 3 weeks)
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kyroheal- I get the bolus with my rads and it's not an injection. For rads, a bolus is something, like a membrane, they put on the radiated area to increase the skin's radiation dose. That is why that area of skin becomes more burnt then the rest.0
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Yep, my bolus is a thick gel-type pad that is laid over my chest wall and axilla, it concentrates the rads on the upper level of the skin.
CT scan is set for Tuesday AM, so I'll know by Wednesday evening if anything is going on. I'm back to feeling nauseated these days, hoping it is just radiation. Wugh.
Heidi - the beach and sailing?? Oh, that sounds like heaven. My dad lived on a boat for most of my teens/twenties, I loved it so. Enjoy!!
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Suze- Did your arm swell up a little on the side they took nodes out since you started your rads? My forearm is a little swollen and is tender since a couple of days into rads. I showed it to my RO and he said it's eodema and it should go away after rads are over. I hope it's not lymphedema......
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Babs - my upper arm has been a little swollen since surgery, we are assuming it is mild LE. I do have what I would say is a little edema on the side of my chest where the rads are hitting me though...I would assume it is LE to be safe, and get a referral for an LE PT as soon as possible. They can fit you for a sleeve and show you how to do LE massage. I go twice a week and it has really helped!
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Suze- Thanks. I see my RO next tuesday. I will ask him for a referral for an LE PT. I really don't want to take a chance with LE because I am going on vacation next month by plane so don't want anything to happen on the plane ride.0
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Hmmm, I didn't get a bolus. I got 16 full breast and 5 boosts but no gel pad or anything like that.
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Anybody been tested for basal type breastcancer? My doc has never brought this up and I did not see it as being tested on my path report.
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Thanks for the bolus information. My rads are still not for a few months, as chemo first then surgery then rads. Also, when people say tomo, is that more precise? Is that something I need to look for? I will need my im nodes and possibly deeper nodes radiated.
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bk- this has been discussed before in here...most don't get tested for basal since it typically doesn't change your treatment plan and it is an additional lab procedure (costly, as I recall). Knowing you were true basal vs. "basal-like" would, IMO, only serve to keep your stress level higher, wondering if your tx was/is sufficient to kill the beast.
I'll pass... in fact, I did! Why go looking for trouble?
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bkj66: I think either you are or you aren't and if you are it's on your pathology report. Mine was right there in black and white but I am not going to give it any power over me.
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Sugar - I think bolus treatment is dependent on size/location of your tumor(s). Mine were fairly large and closer to my skin.
bk - I wasn't tested for basal-type that I know of, but we are assuming I am given how quickly the cancer appeared and it's chemo-resistance. It doesnt change my treatment plan really, we are being aggressive regardless. I agree with Heidi and MBJ. We can't change it, and I don't want to give it any more power to mess with my mind.
Speaking of...I came up with a good way to describe my current mental and physical state today. I am Schroedinger's Cat, lol!0 -
Thanks all who answered by question about taxol and neuropathy. I feel a lot calmer now that it doesn't have to be so bad.
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I officially need a secretary, Chemo brain has struck yet again, I had an appt this morning with my ENT to check and see if the hole in my ear had healed. Well the appt was a 950am, I remembered it at approximately 330pm...I guess I will find out if the ear is healed when the airplane takes off Monday morning to take me to California...I will have to pay $50 for missing the appt and then will have to reschedule.
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welcome to chemo brain.
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Hi everyone,
Welcome Ellipsis, I have a Naturalpath doctor along with all the others, and the B-6 is a good reccomendation. I did take the B complex with extra B-6, but my new chemo is less effective when taken with folic acid, so I was switched to just B-6. You may want to check with your doc about that or any supplement before you start. I have had several types of chemo, and some the neuropathy reverses. Treatments and SE's have come a long way in the last ten years...I have literaly taken part in it. You will do fine.
Kimn, Keep your chin up....the more you do now to treat, the better your chances there won't be more later. You sound like a generally happy girl, focus on that.
LOL Suze, that's my FAVORITE show!!!! And oh how I can relate to that one.I am soooo happy to hear your good news, I think you are on a roll.
up kind of late, I am alone in my house for the first time ever!!! My husband is off having a sleep study, my son that lives at home is away and I am here by myself. Kind of weird 'cause I found out there was a robbery down the road last week (we live in the country) and then this guy came to my door out of nowhere this afternoon saying he was out of gas and wanted to know if I could give him a ride to town for gas. Of course I said no, he was huge! This is very similar to the robbery scenario. While you take them in for gas.....someone pulls into your drivew ay and steals anything of value in the time they have!!! And they say crimminals are dumb. So all the windows and doors are locked and I am going to try to sleep. Lucky me, I have a big big dog. And a shotgun I don't know how to load.......:):):):)
Sweet dreams and prayers to all
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Hi Ladies,
I've learned a lot from just reading your posts. Suze, I'm guessing you must be in my area.
I had my first dose of Taxol on Wednesday. (Yes, I hit the lottery yet again, 75% chance of getting one or both of the experimental treatments in the study......and you guessed it, I'm in the 25% control group, lol) I can't say that I'm thrilled with my oncologist, but I love my infusion nurse.
I was not given one bit of information about my Chemo by my Onc., other than which drugs I would be receiving. (Thank you ladies, thanks to you I was at least hydrated before and after) I did wander over and pick up a pamphlet, at least. When I met my infusion nurse, he asked me if my Onc. had mentioned any supplements I needed? I told him, well I just asked her these two specific questions: 1. Any supplements I specifically need? 2 Any supplements I should avoid? She said no to both questions. Luckily my infusion nurse, had the pharmacist come up and explain the neuropathy to me (I felt bad because I kept laughing because I have a bad back and my feet have been numb for years). She recommended B6 100 mg and B12 1000mg.
One of you said something on here that rang a bell with me (*please wave your hand if it was you, I can't find it now*) It was something to the effect to stay on your doc and make them do a MRI if you don't think your tumors are shrinking. One of my Onc's answers to my question put me over the edge for a few minutes. I asked her at "what point in the treatment would she be checking how much the tumors had shrunk, and what specific test would she be using". She looked confused by my question, and then told me they wouldn't be doing any testing. I asked her how they would be measuring for "tumor shrinkage". She said "oh I feel it with my fingers and measure it with a tape measure". When I questioned her on this she told me it was the "standard of care". ARE YOU FREAKING KIDDING ME!!!! We're in a new millenium here! Ultrasounds are non-invasive and accurate, and you're going to be basing my progress on your fingers and a tape measure! I haven't quite decided what I'm going to do about it, but if I don't think it's shrinking, I'm gonna think about private-paying for an ultrasound.
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Hi everyone, had chemo 3 last wednesday. Bipolar mania is going up the wall, mental health pyschiatrist can't fit me in for two weeks. I don't have a port fitted and veins are starting to collapse. 3 not the best for me.
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Thanks for the info on basal type, I just haven;t heard it mentioned much and certainly not by my doctors. Didn't know if it was something I should be aware of, but if there is no difference in treatment I guess it does not matter knowing. Now I am kind of afraid to ask my doc about it...
BernieElem, I just had treatment 3 and it is the day after. I don;t feel well either. I hope your pshyc can get you in on a cancelation. Are you going to get a port? I have done it both ways and strongly suggest a port, much easier.
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Good Morning, I am still here, no robbery at my house last night!!! Hubby is home from sleep study, he didn't get any rest either, so I am sure it will be a laid back weekend, open houses are next week, and a 50th bday party to attend!!! I will be 50 this year also, and to be honest, I had a lot of doubts about having this bday way back in 2002 when I started this nightmare. Thank you God. This is a horrible monster, cancer in general, takes so many memories from our families futures.
Kathryn--I hope I am not alone in saying NO WAY!!! You are your own advocate, no one is going to be more responsible or attentive to YOUR medical case than YOU! Even if you have the smartest, most compassionate, caring doctor in the world, he/she has other patients...you only have you, and you know your body. God made it possible for you to read the signals. Not saying we catch every signal, but they are our bodies, not theirs. Ask your doctor if she would be measuring her own tumors without any modern machinery, see the reaction. Your insurance pays her salary, she is working for YOU. If you are not comfortable, switch doctors. I have recently been assigned a new doctor at my treatment center, and I am more uncomfortable every time I see her, I am about to switch. I am a girl that wants a plan---Plan A, B and C for a backup, and I can't even get plan A from her. Keep me/us posted on that please.
BernieEllen-So sorry to hear you are having such a hard time. This is an emotional rollercoaster, and sometimes the trip to the top/edge is very high. Makes the ride on the other side too fast and scary. I have never like rollercoasters, only rode one once or twice, by then it was official. Remember, we are here to talk to or vent or whatever. I am a newbie, but I feel very welcome here. Also, have you tried any relaxation techniques or tapes? I just started this, along with my Faith, and have had nice results. Please let me know if you would like more info, or you can probably find it online.
:):)And on one other note: chemo brain--I am on Xeloda, which I read converts in the body to F5U, one of the biggest chemo brain drugs around, and this is my second time with it (WHOLE other issue I would like to discuss sometime-soon), I have had well over 50 chemo treatments and 72 rads in the last nine years. It's a wonder I know my own name LOL
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Kathyrnn- My onco mesured my tumor and node by feeling it with his fingers and some instrument everytime I saw him during my chemo. He could easily feel my tumor getting smaller and softer too so we could see that the chemo was working. I don't think he would have sent me for a mri unless he could feel the chemo was not working fast enough or if my tumor wasn't shrinking or got bigger while on chemo. When the chemo was done I was sent for a mri/mammo/us so he could see what was left inside for surgery.0
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Rella - whew, close call on the robbery! I had something like that happen to me when I was alone in high school, thankfully I knew better also! I do hope you enjoyed the peace and quiet though :-). DH and I watch repeats of that show all the time, lol. And good to know about Xeloda! I'm starting it in a few weeks...as if I need more chemo brain...
Kathrynn - probably me who mentioned the MRI. I had two tumors, one could not be felt. When I finished my AC, we hadnt seen much clinical response, so she ordered an MRI. When I started my Taxol/Carbo, the tumor I could feel seemed to melt away, but my lymph nodes didn't do much, and probably got bigger. Because of my tumor response, every doctor told me it was fine, scar tissue, blah, blah. I could have pushed for another MRI (my doctor would have agreed) but I wanted to believe them. That was my error, and my cancer had progressed at the end. While Babs is correct that doctors generally measure by touch, if you are not comfortable with that, I truly believe you have the right to better screening. Push your doctor to provide the care you feel you need. We only get one chance at this, and it is your life at stake, not your doctor's!
BernieEllen - I'm so sorry you are struggling and can't get to the doctor! I would recommend a port, as stressful as that may seem. It is so much easier on your veins, you never have to worry about multiple sticks, etc. I use EMLA cream before to numb it, so no pain even. Be gentle with yourself, I hope you are feeling better. Hugs.0 -
Rella: Did you report this stranger to the police? Hate to think he just moved on to the next house and it would be good to have a description of him. Huge-I shudder to think! So glad you are safe and your DH is home.
Kathryn: One of my tumors could be felt to the touch because it was on the outside, but my other tumor was under the nipple so I had to have two US's prior to surgery. If it is close to the surface it can be felt and if it isn't it requires an US. Hope this helps! Also, my Onc advised to not take any antioxidants for 3-4 days-the same days you take the anti nasea and steroid pills which made it easy to remember. L-Glutimine is an amino acid and can be taken during chemo.
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Bernie: My veins held up until chemo was done but now they can no longer find a vein at all! Do what you can even if it means getting a port now.
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Luah, congrats on the toenails! I finished chemo last July and my big toes are the only nails that haven't finished regrowing. They're about 75% back, though. I'm not sure if it was the Taxotere, Xeloda, or A/C that trashed my nails, or whether it was all of them combined. They started falling off during the Taxotere and Xeloda, but didn't start regrowing until after I finished the A/C. The fingernails went first, but also came back faster; then the toenails.
Also chiming in to recommend a port, if possible. It was much easier, and used for the weekly lab draws, too.
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thanks rella. Feeling a bit more together now. Will look into the relaxation. Hope all are well
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