CSN Login
Members Online: 11

MISC /exercise during chemo and radiation

ldrunnrmom
Posts: 15
Joined: Jun 2002

Hi all~

I have been lurking here for awhile now- appreciating all of you and your knowledge and support! Thank you to everyone who writes in- those who share and those with the important questions. It all helps us out here.

I am currently half way through my chemo treatment. Next will be radiation (and then tomoxifen)which I hope to start third week of August if we dont get held up again..we already lost a week because of neuprenia problems. I had to start getting neupogen shots so that this cycle the numbers wouldnt drop even more dangerously low. I dont know what "normal" is like really- as far as how I feel from treatments. The first cycle was when I came down with a horrendous sinus infection- with temps around 100.5- 101 - so that was fairly serious. Then this last while I have continued to have low white blood cell counts- hence the shots. This past week though has been a MAJOR improvement- mostly because my head isnt hurting so badly (chemo brain...ugh!) and my stomach hasnt been hurting so badly. SO- I started thinking...maybe I could manage to "run" again- right before the diagnosis, I was running at least three miles a day and even planning to maybe do the Chicago Marathon (or more realistically- at least the HALF-Marathon!!) with my daughter. I was even getting sponsors so I could do the Avon BC 3 day from Kenosha to Chicago in the name of a friend! I was really trying to watch my health issues and nutrition,etc. Some of my family finds it so ironic that I should have this happen when I have been so careful to try to live clean and healthy. I had a nice routine and that was trashed when I had to start with the surgeries. (I had three in about the same number of weeks- lumpectomy/biopsy-partial mastectomy/lymph nodes/install venous cath)Then the chemo and ugh factors and sickness associated with that. Oh..and they had also found my thryoid was whacked out again- I am hypothryoid- so that had to be adjusted- which made me even more run down and tired, I think. But now I am thinking MAYBE just maybe I could try to do a little exercise each day. The last three days I have managed to get in two miles or so- walking and running on treadmill- or more on the recumbent bike. I cant go outdoors because of the ozone warnings but that isnt problem because I have equipment at home plus I joined a health center a few years ago because of other health problems- I am supposed to do cardio and weightlifting regularly because of those. ANYWAY...my question- yes there is a question in here- is whether anyone else has or is doing a regular program of any kind and how do you/they manage this around their treatments? I just know that I need to do this- my skin feels so different and my muscles aren't so firm. Every thing I read indicates that nutrition and exercise are very important, but I am frankly amazed and optimistic that I can even think about this!

Any thoughts would be appreciated.

Also would appreciate hearing from anyone that has a porta cath- I have been told this will stay in for two years- anyone else been told same? Mine is installed under my collarbone on opposite side to my BC site.

And since I have already rambled so long...wanted also to talk about hair loss. It was awful when it happened- not like I thought it would be from what I had read. My head hurt a lot and it was too creepy- I would touch my head and you could feel the hair...like...MOVE... ewwww! But it isnt so bad now and I have adjusted- most of the time I dont bother around the house with anything- and my kids have been cool. I just think that while I was right to cut it from above shoulders to "pixie" length- I needed to go the extra step and have it buzzed to one inch all over- and I recommend that to anyone contemplating loss. I got a beautiful wig and another hair thing that can go under a cap- but mostly I use scarves- just normal ones- small squares I guess. It doesnt bother me- and it is cooler. Oh- and I didnt lose ALL the hair- just most of it. Dr said maybe the rest wouldnt fall out but I dont care any more whether it does or not. If it doesnt tho- I should get it cut to same length.

Night sweats? I get cold all day - then at night I have to lie outside the covers most of the time and I wake up a lot.

Well hope those are some discussion points :)

I have spent so much time thinking of the scary things and the process and treatment that it is nice to think about something more frivolous. I would love to reclaim some of my more regular life again.

Hugs to you all

Chris

judy22
Posts: 119
Joined: Apr 2002

Hi My name is Judy.Whew what a letter[just kidding]. I don't know about the running part of it but I do have a port. I would not do chemo without one myself. About the hair I just shaved my head when mine came out. I have lost my hair 3 times and it hasn't came back blond yet.I have been on chemo 5 yrs now and I just keep on going.Judy If you would like you can e=mail me evansj22@bellsouth.net

ksfc
Posts: 252
Joined: Apr 2002

Hi Chris,

As far as exercise, I have continued to walk everyday that I could during chemo and now radiation, but I was told not to do anything really strenuous. I would ask your doc. I know what you mean about your hair hurting as it's falling out. That was one reason I shaved mine early on. I'm about 1 month out of chemo and I have a little fuzz now. I also have a port-a-cath and am not sure how long they plan on leaving it in. I asked about having it removed and was told "not yet, we'll talk about it after radiation."
I would imagine it will depend on what the follow-up tests show then. I'm scheduled to start tamoxifen at that time. The night sweats are the pits. I don't have them every night, but I do spend a lot of time out of the covers. During the day, I have what you would call mild hot flashes frequently- not too bad, but bad enough to have sweat break out on my bald head. I just turned 46 and my periods stopped after the second treatment of AC. Good luck and keep us posted. Diane

24242
Posts: 1417
Joined: Mar 2001

Hello Chris,
Thanks for sharing so much of yourself and trusting in us enough to do this. I think just writing what we feel sometimes helps to make it real and give us a better chance at facing it and then letting it go. I have found through my cancer fight that I have had to learn to let allot of things go, even people who have done nothing for me for so many years. I have closed the doors on several things and find I am much better for it. My thoughts are with you girl. Keep on Keeping ON.
It was stressed through my treatments that keeping active and exercise is important and I have had heard of women being able to continue their exercise programs but there are those of us who just don't tolerate any of it very well and it is difficult to do everyday things let alone an exercise regeme.
Being good to ourselves is the best thing that we can do what ever it is for ourselves.
Tara24242

ldrunnrmom
Posts: 15
Joined: Jun 2002

Thanks and hugs to those of you that responded to my "note" :)
I guess with the exercise thing- it is just like with the rest of everything we hear- those words- everyone is a little different! I just hope I can keep feeling like I can be active. It has been (or so it seems) a long time since I felt that way and I have missed it.

Random notes:
Went for bloodwork today- and it was weird- after three days of feeling pretty darn good-I was dizzy this morning and a bit headachy. And I had to drive myself because I had told my husband that I was feeling so much better that it would not be a problem! Well..anyway-turns out now I am anemic- as well as having the low white blood count. Guess what- yes- they have yet another shot that works for this. Of course they do :) It is Aranesp. Good news is you only get one shot of this per week. My arm is still a bit bruised from the others so that is great news...AND they said that starting next week they will be using something called Neulasta instead of the Neupogen- and the good news there is that it is given once per CYCLE rather than every day. Got to look on the bright side right??! They also told me something interesting about the Arenesp- I signed a paper so that if there was any trouble with the insurance company- it appears the drug company will cover the cost. I hadnt heard of anything like that before.

OH...was going to say thatI am on a three week cycle -- taking Adriamycin 10mg/Neosar 100 mg/Anzemet 10 mg/Dexamethosone 4mg. I take Zofran for the nausea after sessions- it is pretty good. Was taking Compazine(?) before and it made my head feel funny(er).

I agree with Tara about "Being good to ourselves is the best thing that we can do what ever it is for ourselves"...that is my motto these days :)

But along with myself- I have also had to worry about my mother-in-law. She was diagnosed with BC in the past month too! Fortunately, it is looking to be less aggressive but still...she is 76 years old. An active 76 (she still bowls in a league and can do 200's!) - but I think there are concerns about her age nonetheless. She saw the radiation oncologist last week and today is the appointment with the medical oncologist. From what I have read of her condition- I think she will have radiation for 6 weeks and then some form of light chemo with tamoxifen. I didnt think iniatally that they would give her chemo but the literature seems to say that the tamoxifen would work better with some form in conjunction? I am anxious to hear what her doctor says today. I know that my husband and I have been a good resource for her and my FIL too- we had so much in our own resource library and all the internet research etc too...we were able to make them feel more comfie about this, I think.

Anyway- thanks again for your thoughts. I appreciate them all...and YOU!

Chris

ksfc
Posts: 252
Joined: Apr 2002

Hi Chris,

My first chemo, I got the regular neupogen shots. The next three, I was able to get the neulasta. It was really nice to just get one shot and it worked well for me. There were some body aches from it, but Tylenol seemed to help with that. Good luck - Diane

banker
Posts: 321
Joined: May 2002

Hi Chris, you refer to a porta cath.Is that the same as a Medi-Port ? A little quarter size gadget , put in under the skin for easy access for chemo? If so , I had one 3 years ago, it came out when I was done with chemo and all tests came back clear of BC.
It did not stay in 2 years. Just had one put in for this chemo, started 2 month ago. Again. With this chemo my hair is thinning, I am shedding like a dog, but it does not come out in big bunches. Still got most of it. I feel pretty good during this chemo, went back to work part time, try to eat well and drink lots of water. Have some hotflashes, but they are under control. When I feel good I do anything I want, when I am sick, right after chemo, I go and hide, ha ha. Everything is around Doctor appts., treatments, shots( I have to give them myself, Doc.is 2 Hrs away) Almost a normal life?????? Enjoy each day as it comes, live a quality life, if your Doc. says its OK do what you like to do. I wish you the best, looks like you're on top of things, hang in there, it WILL get better. Hugs....Emmi

ldrunnrmom
Posts: 15
Joined: Jun 2002

Hello!
Emmi asked about my reference to "porta cath" and whether that is "the same as a Medi-Port?" I bet it is...I know I have a medical alert card that refers to a "BardPort" but what the thing is is an implanted port with an open-ended catheter. It is an Implanted Vascular Access Device. There is a picture of this thing and how it is installed in the common cancer resource book, The Chemotherapy & Radiation Therapy Survival Guide (McKay/Hirano). How long after your treatments, Emmi, before you were considered "clear of BC." I look forward to such a day :) I dont know the why of the two years I was told...but I guess it isnt such a big deal and I will manage for whatever time it needs to be there. I havebeen glad to have it for the most part- but it is weird- some of the people at my clinic DO have troubles with thiers- they dont get thier blood drawn from the port -only thier chemo. The nurses said some people's ports dont work as well as mine- but I dont know why. I do know there was a lady there one day that told me they had her practically "stand on her head" to get the thing to draw...but that is pretty rare. I am just thankful mine seems to work GOOD- all the time.

So, you had another one put in again? Yikes...are you saying you had a recurrence, then? Please tell me more about this. (write me if you want-anybody- at LDRunnrMom@aol.com)

Guess I have some learning to do here about the people that are writing in to this board! I am list manager for some Yahoogroups for various special interests/non -profits I am involved in- and usually along about now I would be saying- could everyone that reads this board write in and give a quick bio! But I guess that is too hard here...would anyone be interested in joining if I started a list group for us- it might be easier than the way this operates- or attract some additional people- PLUS we could have pictures and articles we collect to share. Just thinking out loud- but the offer is sincere! Simple enough to do.

"With this chemo my hair is thinning, I am shedding like a dog, but it does not come out in big bunches." When the hair was coming out in bunches was bad but sometimes I think the shedding time was worse....hair EVERYWHERE! Ugh. But I can see maybe "thinning" is not all bad- compared to the alternative :) Maybe.

I am convinced that drinking LOTS of water is real critical.

"When I feel good I do anything I want, when I am sick, right after chemo, I go and hide, ha ha." Sounds like my life too :)I am spending more time in my bed the past few weeks- I even invested in new linens and things to make it more attractive. Silly huh? But I read it somewhere :) Still, I would rather be up and moving around- but you do what you have to, depending on how you feel.

"treatments, shots( I have to give them myself, Doc.is 2 Hrs away)" WOW. I have read about giving the shots to yourself...hmm..not sure if that isnt better in some ways- some of those nurses were not so good at the shots. Like I said- I am now part pin cushion! Guess you are too!

I just spoke with my M-I-L... she saw the medical oncologist today. She is supposed to start chemo next Monday! We are surprised- thought she would start with radiation. She forgot to find out which drugs she is to take but she thought one of them was Adriamycin...yet the Dr said she would NOT lose her hair because the dose would be light. She is to have six cycles- so it will take about four monthes- then radiation. Does this sound right? She had invasive DC- 1.5 cm- positive HR's and her HER-2 was a minus. She is 76- so post menopausal. Her margins were supposed to be well defined and the Dr felt all was clearly taken out. She had sentinel node biopsy and that was negative. I asked her to call the Dr office tomorrow- find out which drugs and what dosage will be. I know my cancer was more aggressive but this still seems odd to me- I had almost a 2 hour session before I started the chemo (with the oncologist nurse) about side effects etc but they basically told her she wouldnt have much in the way of side effects and she is to just START...like that! I dont know...do you 'all have any ideas about this?

Again thanks for the positive thoughts !

Chris
ps- re "bone surgery postponed" ...this is awful- about the accident,etc. Will include the whole family in my prayers! Best of luck and hope all is well soon!!

martyzl's picture
martyzl
Posts: 196
Joined: Jun 2002

Wow Chris!
I am just coming in the door behind you. *smiles* Mast/Reconstr. due on 7.22.02 after a month of postponement due to insurance doo-doo. Then chemo...

I haven't run for nearly a year as my energy level had dropped so, probably cancer, eh? Just walking a few miles a day now....

Thank you so much for sharing what is going on in your world, things for me to look for, etc. Very appreciated.
I am going to call the surgeon to request a port as well...
I just cut my mid-back length hair off to a pixie as well then plan to shave it just before chemo starts up. Not a big deal for me, it's been buzzed, bleached, coloured a rainbow of hues, etc. Just hair, to me. My husband suggested the cut as our 6 yr old daughter was freaking about me going bald. Poor thing. Now we all have short hair!
Think about keeping it shaved, think of how it'll help your times! *teasing smile*
Chris, can I ask what type your BC was? How old are you?
I am 37 and the cancer was invasive DCIS, vascular invasion, the works. her2neu 3+, lymph nodes unknown as of yet...

You are half way there with the chemo, they say the radiation is easier for many in comparison.... this time next year you'll have a whole new world going on!

Be very well Chris!
Marty

ldrunnrmom
Posts: 15
Joined: Jun 2002

Hi there!

Now Marty, we are going to want to hear all about how things go, ok? So dont forget to write and tell us! Will be praying those lymph nodes are negative.

You asked what kind of BC I have and how old I am :)
First of all I am 51 and have three kids- all -starting this Fall- in college! Yikes, huh? Oldest is my daughter Marisa, who will be 24 in Dec. and is in her second year of graduate school at Univ of IL/UC. Second is son James,22, who is Jr there at UIUC too. The "baby" is John who is 18 1/2 and will be attending local college here.

My diagnosis was DCIS and DCIC (or would that be IDC?)Nucelar grade 3, histologic grade 2- tumor was 1.5 cms. I found the lump myself- and had a devil of a time getting the appointments all straight -didnt seem to be much of a hurry to anyone but me! I was thinking of your problems with the insurance- and my thought when I was having trouble getting those appts settled was "dont they realize I could have cancer here!!" Like..."hello!!" I could die maybe? Sigh. Anyway...originally we had the lumpectomy and nothing else. When it was found to be invasive cancer we had to go back in the next week and reopen the excision and clear up the margins a bit better- which was lucky because they did find more cancer cells- and we removed some 10-15 lymph nodes. We had WANTED to do the sentinel node type biopsy but there were some scheduling problems. Nodes were negative which was good! Then we got the results back on hormone receptors- which I gather is the one result you WANT to be positive? Anyway- mine was negative but the HER-2 was a plus 2- which I understand is associated with more aggressive tumors. The DNA and MIB-1 Ki-67 results were in the unfavorable range which is associated with adverse prognosis :( And I had a high level of Cathepsin D- which is a predictor of shortened recurrence-free survival. However, my p53 results were favorable- which in node negative BCs is associated with favorable clinical behavior. Let's see...anything else? Cant think of any right off hand. That is enough for me!
So from there I went off to see the wizards...I mean the oncologists! I was led to believe we would start with radiation- but that isnt how it turned out. I saw the medical oncologist and he said that we needed to address this cancer aggressively and that we needed to be concerned not only about the current cancer but the very real possibility of recurrence in my other breast. They looked at my veins and discussed how the level of Adriamycin I would need to be taking could damage the veins,etc...I guess it is so powerful that the drug can eat away at your skin (necrosis) if there is leakage?!! I was sitting there looking at my poor hand from what the anesthiologist had done the previous week- still a spectacular rainbow of bruising and yuck- and I have to say I didnt have to think TOO hard about whether to get the catheter implanted. I was insisting on going to a week long out of state event connected with my kids and my job with a non-profit organization called Destination Imagination- which didnt make them all too happy...but they agreed that I could if I was sure to rest ( haha) and we would start the treatment as soon as I got back. Of course I agreed- I was anxious to do that too! So- we had that port installed before my trip...my husband had been concerned that I was rushing to do it and would then have the whole week to have to deal with the soreness etc. He reminded me that the Dr said they could use the port the next day if they had to- I kept saying but...gee...that seems like it would hurt maybe? Just because they CAN doesnt mean it is what you should do! Seemed to me to be worth it to have two weeks to recover before accessing it- if possible. Last week while I was waiting to have blood work done, there was a little lady that came in and she was softly complaining about how much her port hurt- she was still bandaged and would be having her chemo the next day using it! Yikes. Yeah...I am a baby about some things. But if I had HAD to do that I would and beeen fine. I am also fairly stoic when I have to be. I dont think the port "hurt" btw- I think it was kinda uncomfortable more than hurting. And thatmakes sense- that it would be a little uncomfortable and sometimes still is.

Anyway...I think the chemo has gone fairly well overall. And it looks like 4-5 crummy days then a week or two of relatively less intense stuff. The low blood counts certainly make it more complex...but the shots are not too awful. Annoying but not really PAINFUL. Perhaps it is from my vanatage point of having three almost ten pound babies that helps me keep that in perspective though :)

I thought it was neat to see how Lisa has been able to keep up with her tennis and her golf. I have found two books lately that talk about breast cancer patients and exercise. Breast Fitness:An Optimal Exercise and Health Plan for Reducing Your Risk of Breast Cancer by Ann McTiernan M.D. Ph.D, Julie Gralow M.D., & Lisa Talbott MPH
(St. Martin's Press)is a good one and it led me to a group called "Team Survivor" - I just wrote to them about joining. It looks like they have affiliates in both Chicago and Milwaukee and are interested in starting one closer to me- half way between the two :)I think I will be involved in that. They have a web site if anyone is interested http://www.teamsurvivor.org/events/index.htmlThe other one is Essential Exercises for Breast Cancer Survivors (Halverstadt/Leonard). I found both books at my local library but they are also available through Barnes and Noble online for fairly cheap. I decided to order some books from them recently and did a search under "breast cancer"- it is helpful to see what is out there! I pre-ordered (yet to be released ) a cook book and a book for chemo patients -it is exercise plans for them. I went ahead and reordered that one because altho I hope to be done with chemo soon- I still have my m-i-l that will be doing it for monthes. I will let you all know if they are any good!

But about the exercise stuff- in the one book it said that while doing chemo you should not be exercising above 65% of MHR- and you cant really do a complete stress test right now to determine what EXACTLY is your maximum heart rate- so do that the old way- 220 minus your age and then take the 65% off that. The frustrating thing is that it doesnt take much to raise my heart rate right now! I cant really RUN- I have to walk and not really over 3.5 unless my heart rate is to rise too high. They say that walking and exercise can help you with fatigue- but too much or too intense can make the fatigue worse. I can only assume with my low blood counts that could be an issue too. I plan to discuss this with the Dr on my next appointment just to be sure. I do know better than to get on the treadmill when I am dizzy etc.

OH..Marty! The other thing I had done before starting treatment was to have a muggascan- not sure if that is the actual wording etc but it sounds like that. With the level of Adria I am taking- it can cause some heart troubles- so they do this thing with nuclear dye and a scan- it is no big deal at all but apparently very interesting. I didnt see much- but my husband got to see my heart working in all its glory :)

Well- thanks for the opportunity to chat! If you want to talk privately some time- DO write to me at LDRunnrMom@aol.com We also have a family web page- the following link is to the latest outing I went on and has my WIG- the last picture! It is really very nice but I dont bother with it much. I am sure if we went out to dinner,etc I would - but for every day I dont care that much. Too hot! I do also have a wig that has the top of head open ....maybe I SHOULD wear that to justify the expense of getting it...it is hard to know when you first start out- what you will feel like later.http://www.groberg.net/Heather_6002.html

Hope today is a great day for everyone

Chris

llange's picture
llange
Posts: 54
Joined: Dec 2001

Hi Chris,

I just finished my chemo about 4 weeks ago - 4 treatments of AC followed by 4 treatments of Taxol. I just started radiation yesterday. My lumpectomy was in Dec., and chemo started in Jan. I'm very glad to be done with the chemo, although I'll be even more glad in Aug. when rads are done too.

I was able to stay active throughout my treatments. I'm a competitive tennis player, and I was able to keep playing 1 or 2 times per week. It would take me about a week after the chemo, and then I played only doubles and I didn't strain myself. My doc said just to listen to my body and don't fatigue myself. Also when I started on Taxol (which was much easier for me than the AC) I was able to golf, and a couple of times I even walked 18 holes. I was very fortunate that my blood counts were really good throughout the treatments, so I'm sure that's why I was able to stay active. But I think the bottom line is just to listen to your body, and don't over-do it!

My hair started to fall out 2 weeks after starting AC, and I had it shaved right away - my wig looked much better than my thinning hair and I kept clogging the shower. My hair started to grow back when I started the Taxol, and now I'm not even wearing the wig anymore. Tomorrow I get it cut for the first time (just to shape it a little).

Good luck with your treatments, and to your mother-in-law as well!
Lisa

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network