Starting Chemo in Nov. 2011...anyone else?
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Hi All,
Tipnas-- welcome "back" and congrats!
I think Bonseye posted about getting back to normal and I have heard a few people say something to this effect. Back in late 80s, I went through Lymphoma and had to get my life back on track (I was working on my Ph.D. when it all happened). I have some ideas from that I would like to share;
Don't expect to go back-- you can only go forward. And by this I mean that it takes embracing your experience for all of it, the bad AND the good. From the good we can transform our lives (much like Bonseye was saying) but also on more subtle levels.
And, expect subtle changes-- look for them and revel in them.
Lastly, we can be our own worst enemies-- DON'T expect to just bounce back. Each of our responses to chemo have been different, likewise each of our body's responses to no chemo will be different. It may just take quite some time to recover-- it took me 8 years...really! (not that it will take you that long, lymphoma tx back then was very harsh)
Be kind to yourself and don't let others push you into believing its over so now you are "normal" pop right back into the world kind of OK.
I will never be normal and I don't WANT to be-- normal is not what I aspire to, in life.
Just my thoughts,
Q
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I had a nurse navigator assigned to me but only saw her after my surgery. Has anyone else had experience with a navigator? I am going to start a support group in our small community as soon as I feel like I can handle some things. Right now I could use a support group to tell me what happens next. That is why I keep coming back to my friends her in the November group. You have known me from the beginning and have helped me so much. Thanks and hugs to each of you!
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Q --- Thanks for everything. My supervisor wants me back because I bring her joy...whatever. I think her bubble may be bursting soon. This is my new state of normal...I have good days and I enjoy them a lot. I enjoy them so much that the next day is a down day or day of rest for me. This is my new normal for a while. Like Q said, "It's okay!"0
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Quaatsi, very wise words, thank you.
Beth, A support group is a great idea.
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GrandmaV - I agree a whole week with out MD appts, it almost feels overwehlming to me, but how wonderful. Congrats on finishing rads.
Quaatsi - Very insightful, we are not going back but forward. YES YES AND YES. There have been some changes in my life and I do not want to go back to where that was not the case. What the future holds I do not know, but goiung to try and accept what comes my way.
Beth - Do not go back to a job you do not enjoy for your supervisors needs. Put yourself first, everyone around you will adjust, or not. The ones that don't , too bad for them. Enjoy the wedding, grandbabies etc. How wonderful.
I am doing well, mostly the emotional stuff that gets me down these days. My ds is home for 2 weeks for spring break. Love having him here,tho there are certainc hallenges with an 18 year old. He and my dd 13 are doing OK together so all is good. I am pacing myself thru the days and jsut trying to enjoy the early spring we had here in NE and the fact that I have 2 happy healthy teens that can bug the c*** out of me.
Gentle weekend to all
Nel
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Bethu, congrats
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Hi Ladies,
It's been a LOOOONNGGG time since I posted, but I have followed faithfully. SO happy to see everyone is finishing up or half way through! Me, too! Finished my last chemo Monday (the 19th) and now waiting for appt to set up radiation treatments. When I think back when I started WAY back in October 2011 it seemed like such a long time and now...it's DONE! From all the posts I've read here, radiation isn't too bad. If I can do Chemo I can surely handle the rads! Thanks to everyone; even though I followed along silently..you all have helped me get through this :O) Congrats to all...we are all TOUGH GIRLS!!
OXOXOXOXOXOX
Kathy :O)
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Congratulations Kathy! It was so good to hear from you and very happy you made to the end of chemo. I hope rads is easy on you.
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Congrats GmaV--yay!
BethU--twins! What a gift!
Okay, so all of you-- I'm supposed to start rads 4/11. But when I talked again to my MO last wed for my last Taxol, I mentioned to her that I'm getting a BMX/recon following rads after my skin heals (like 8 months according to my PS). I've been set up for whole breast radiation and when I started thinking about this, I wondered why we were doing that when I'm going to have surgery. My MO agreed--and ordered an MRI for my chest (this Friday). She wants to talk to my RO after we get the results. I never had a breast MRI although I had a PET and it was negative, back end of October before chemo started. She wants to see if there's any involvement any place else in my girls--if not, she thinks radiation of the whole breast may be overkill. Although I have some node involvement, and the clavicle nodes have to be zapped, we aren't sure the whole breast needs it if I'm going to have surgery. She, like me, wants to avoid a higher risk of lymphedema later.If there is multi-focal involvement (it happens more with ILC which is my BC) then we may move to surgery first? Then rads and recon later...maybe.
I'm 1) nervous about the MRI--you know, another test) and 2) feel uneasy now since my game plan might change; I thought it would be on to rads for 6.5 weeks and then surgery later. Now it seems that might change.
Anyway, I'm kind of freaking out about this, and need your thoughts.
XO
Claire
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Congrats to Kathy, too!
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claire, I don't know anything about reconstruction, but it sounds like a good idea to get an MRI first. If something shows up, you'll know more about what to do. I can see why you'd be nervous about an MRI, I have a mammo coming up at the end of April, and I hate to even think about it. But to me, it's better to know as much as possible to make informed decisions. It was a good thing you mentioned this to your MO, that was certainly the right thing to do. Good thinking.
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Claire, I agree with GrandmaV, it's better to get as clear a picture as possible in order to make the most informed decision as you proceed with treatment. I will be alternating mammograms with MRIs every six months, starting next month. My breast surgeon said MRIs are very sensitive for detecting IDC and I presume ILC, as your MO ordered one for you. I had a breast MRI as part of my initial diagnosis. The procedure went fine. You are lying on your stomach with your breasts "dangling" (sorry I couldn't think of a better word) in two cut outs. It's a bit noisy, just like a regular MRI, but they gave me ear plugs. I'm a bit claustrophobic but they had a little mirror so I could see the outside world and my head was barely in the tube. I don't recall that it lasted too long.
I also like to have a plan and it's a bit upsetting when we are geared up for one course of treatment and then it changes. I guess we can add flexibility to the list of character traits we develop as we go through this. It's also better that you thought about this before you had started into your course of radiation. You still have time to think about it. Sounds like you have doctors who respect your opinion. Good luck with coming up with a treatment plan you are comfortable with!
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Hi Ladies- Just checking in and catching up on all the posts Congrats to Kathy, GrandmaV & Bethu!!!!
I am wondering if anyone else is having weakness & motivation issues? I am 4 weeks out from my last chemo tx & I had my TE exchange surgery last Tuesday & am now looking forward to starting my RADS in mid-April.. I thought I would start regaining my energy---but I have not. Is anyone else dog tired? I am beginning to feel like this is not normal & I can only hope that this is not my new normal :-)
Hugs to you all
Rose
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Rose, I am with you on the dog tired. I didn't feel the fatigue from rads until this last week and I've spent the biggest part of the weekend sleeping. I think it's also emotionally draining. I've heard it gets better once you're through with active treatment for a while, and I'm looking forward to that. It could be your blood counts are still low from chemo. Anemia can make you tired. My anemia is better, but not completely rebounded, yet. Hopefully soon.0
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Rose ~ I don't know how to say this, but I am relieved to hear (but not glad) that others are having the terrible issue with fatigue. I am 11 days out from my FINAL chemo (TCH) and I can not seem to bounce back. I started with a sore throat and low grade temp last night on top of it. Please tell me that this will resolve sometime soon! I have felt dizzy at times as well. I am beginning to think I am just a hypochondriac and it bugs me. i have a goal to get out of this house by Tuesday, but don"t know if I am going to make it. Sorry to whine and complain, but I really would like to know if this is something anyone else has experienced? After I finished thje treatment I was doing OK but it seems to have gone downhill in the past 4 days. Share whatever you can...I need encouragement right about now and I know you guys will understand and probably give me hope that I will make my appointment with the radiology onc on Thursday. Wah! Wah! Wah!
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Linda, you're probably still having SEs from chemo. How are your white counts? If you still have the sore throat and temp in the morning, maybe you should give your onco a call, or if it gets worse tonight, give him a call tonight. Don't worry about the radiology onc, he'll still be there when you're up to it.
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GrandmaV ~ Thanks for the advice. I am going to e-mail my onc right now and if things get worse during the night (temperature going up) it will be a trip to the ER for me. My DH already said I should contact the doctor,but somehow the encouragment from my buddies here always seems to reinforce what I already know is the right thing to do. I have had an issue with low platelets after 2 other chemos, so maybe that's why I am feeling so out of it now. Will keep you posted. Many thanks...Linda
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GrandmaV - I did not think of anemia, I know that ny RBC was a tad low when I completed chemo, but not low enough to treat. I have an F/U appointment with the PS this week. I will ask him to look at my pre-op blood work and perhaps he can order a new blood panel. It is entirely possible that I am anemic since I am an "almost vegetarian". The only animal flesh I eat rarely is organic chicken. I also eat a small amount of wild cold water fish. I will keep you posted!
Linda- I am also "relieved" that others are also have an issue with fatigue. I too am going downhill as time goes on. I thought that the break between chemo & RADS would help me rebuild some of my energy level-- it did not. Boo Hoo!!! Sometimes it just feels good to vent. Hang in there, better daays are on the horizon (I hope) :-)
Wishing all a restful and peaceful Sunday evening. Hugs
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texasrose and linny, it's just been in the last couple of weeks that i can go and do all day. i'm just now realizing that i'm not tired all the time ... and i'm 4 months PFC and one month post final radiation. i know the radiation slowed me down a bit, but i just think it takes longer than we hoped to get all the energy back. i remember staying in bed or in the house much longer than i thought was 'normal,' but i couldn't help it. all this to say ... it DOES get better. (of course, i'm one of the older ones here at 66, so maybe some of this is my age, but i sure hope not!)0
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Fatigue? bone tired?
In Traditional Chinese Medicine we look at people's constitutional being and while I cannot prescribe for each of you anything since I cannot see you I would say that overall, if you have a sort of solid body type-- not the willowy thin type -- you may be a good candidate for Astragalus. Astragalus is very very effective for energy (Chinese call it Huang Qi and Qi means life force or energy).
I would say also that acupuncture can do a world of good for this and if you find a good acupuncturist who is fully licensed in both Chinese herbs and Acupuncture, he or she will be able to find some formulas specifically for you which will boost your vitality greatly.
(I am an astragalus type but also a licensed Acupuncturist/herbalist. I use astragalus regularly, in pretty large amounts, also mushrooms specific to cancer tx, a formula for constipation which becasue of it, I don't have thank goodness! etc. plus the needles!!).
You can pm me if you want more info (but no diagnosis since seeing is one of several important diagnostic traits). Q
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Q - Thanks for the info on Chinese medicine & accupuncture. I am out of town for treatment & do not have access to my Texas doc certified in chinese medicine & accupuncture. I was on chinese herbs for anxiety & received accupuncture on a bi-weekly schedule. Before I left Texas for BC tx he told me that he works with many oncologists on side effects from cancer tx. I will definitely touch base with him when I return to Texas. In the meantime, perhaps I will look into an chinese medicine doc in the Baltimore MD area. Not sure if I can receive accupuncture becasue I had 10 lymph nodes removed from my bc side.
Have a greatday. Hugs
Rose
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Thank you Tipnas and GrandmaV. I agree--better to know than not. I don't want anything getting away from me again.
Q mentioned astragalus. I took it all through chemo (nearly 5 months worth) and it may have helped me keep up my high level of activity. I'm not a solid body type though--I'm tall and now pretty thin. But still--I know it builds WBC and that should be a positive.
XO
Claire
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Thanks, Q. I appreciate the words of wisdom from someone who has experienced this before. I remember after being off for 2 weeks with my initial surgery, I really felt like I needed to get back to work so that I could feel normal again, and that was before I had been through the chemo, radiation, and hormone inhibitors. You are right, too, in that this experience will be part of us from now on, and we cannot expect to blot it out. But at the same time, I don't want this disease to define me. I don't want others to think of me as the woman with breast cancer. Last week my husband and I were fighting, and I remember thinking that I never wanted him to think he needs to stay with me because I am (or was) sick. I am starting to exercise again, and I don't like to think that some obstacle is too much for me or too hard for me, although it may very well be. As we all search for our new "normal" I wish us much success and happiness along the way.
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Hello Ladies ~ Like Linda, it is somewhat helpful to know that everyone else is still fatigued. I am now 5 weeks PFC and my energy seems to come in bursts. Waking up is still rough, every single morning, but then I will feel really good sometime late morning/early afternoon. Then....I invariably over-do and then I'm wiped out again. It is maddening because I was such a busy person BC. I used to get up and make my bed and never even think about laying in it again until bedtime. Now, I often wander into my bedroom and rest at any given time. BUT...this is just a season in my life and this too shall pass
Stay healthy everyone!
SAN
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Linda & other tired ladies-I think it if perfectly normal to be very fatigued for a long period after the chemo treatments are over. I remember when I first started, I hiked with my husband on the first couple of days after the first & second treatments, but by the time of the last one, I couldn't walk across the bedroom without being out of breath and thinking there was something terribly wrong with me. Even after a month PFC, I was very concerned about taking my 7th graders on a field trip because there was a 2 block walk involved. Besides the fatigue, my eyes were still poring water so much that I couldn't see most of the time for at least 6 weeks, and my legs hurt really badly. I don't know if you would call it joint pain, bone pain, or what, but my legs hurt when I walked. My calves hurt, my thighs hurt, and walking was just a real painful chore for a long time. Now that I am 2 months past my last chemo, I am finally feeling more like my old self in a lot of ways. I still have some soreness and can't run a marathon, but I have gotten up to a one mile walk, without much pain. So please give it a little longer. I have read and the doctors told me that the effects were cumulative, meaning that it is perfectly normal for them to be worse with each treatment. Don't give up. It will get better.
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bahamamom, how are things going for you on the homefront? you've been in my thoughts.0
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Grandma-I am on arimidex. I didn't really get an explanation of why the onc chose that one over the others, but like you, I am sure they are all pretty similar. I have not experienced any side effects yet, and it has been about 3 weeks now, I think. I have had 12 radiation treatments, and I know I started them about the same time I started the pills. But my onc did say that the side effects from the medicine I am taking don't usually start until about 6 months. I wanted to ask you since you are now a "veteran" rads patient, I saw where you said you were very red, but no pain. I am wondering if you mean no pain as in no pain, or if you mean that you just feel a little sunburned, but no real pain besides that. So far, I am a little red and my skin is dry. My breast also feels heavier than the unaffected one and harder, not soft and pliable. Do you know if that is normal?
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YaYa-Thanks for your thoughts and concern. I had a great weekend. I really don't believe my husband meant any harm in emailing his old friend, and I know he did not hurt me on purpose. I think it was more bad judgement on his part that anything else. We have talked every single day about it, and I know he is sorry that he didn't tell me all about it and worried me. He even asked for my permission to send one more email to explain to her and insisted that I read it. He told her that he had told me about the communicating but had neglected to tell me how often they were communicating and that I had been hurt when I found out. He also sent her my email address and told her that anything further needed to be sent to both me and him. Anyway, with all the talking and much "alone time" together since Thursday, I am feeling much better and much closer to him than I have in a long time.
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bahamamom3, I have had no pain on the skin at all. Very itchy at times and now I am peeling some underneath. It seems that just before I start peeling the itch starts. I have sensitive areas that when my clothes rub I am aware of it (nipple), but I wouldn't call it pain. I still don't have feeling in about half my breast from surgery, so maybe that helps. I was posting on the February rads thread and some of the women had some skin issues and some had big time skin issues, but many others were about like me. I really think the emu oil helped a lot. I was also taking high doses of curcumin for a clinical trial, so maybe that helped too. One thing I do know, is everyone is different. I burn easily from the sun, but my RO said that doesn 't seem to have much to do with it. It's a relief to hear that you and your husband are working things out. Maybe you'll have some peace now.
edited to add: I have had a few jabs of pain inside the breast, that only last a few seconds, some of the other ladies described it as zings.
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On another note, my eyebrows came in with a vengeance. I've always had bushy eyebrows that I had to pluck, but this is ridiculous. Sure wish the hair on my head would thicken up like that.
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