Any older women who are doing or have done TC chemo therapy.

BellaJean

Hi all,

I've just gotten back my oncotype results and to the shock of everyone I rang the bell. It looks like I will have to have chemo. This is after 6 weeks since surgery and three specialists saying no need for chemo.

My MO at the time of our one and only appointment mentioned that if I wanted chemo she would use TC  chemo therapy : 4 cycles. I don't know if that is still her thinking, but I'd like as much information about it and side effects as I can gather before I see her at the end of this week.

Any experiences would be greatly appreciated. Thanks everyone and have a good evening.   

judyfams

I was 67 when I had IDC - stage 1 and did chemo last year.  I did the following:

1. Planned chemo on Thurs. so I would have the weekend to recuperate.  Then took notice of which were my "bad days" so I could plan for them.  Chemo on Thurs, neulasta on Fri. and my "bad days" were Sat. Sun. and Mon.

2. The 2.5 weeks until my next chem was when I scheduled shopping, laundry etc since those were my good days.

3.  Ate many small meals during the day that contained lots of lean protein as well as soups, fruits and veggies.  Stayed away from fast food, and fatty fried food.  Drank lots of water and iced tea and other liquids all day especially the day of and the day after chemo. When I didn't feel like eating I drank Ensure - kept it in the fridge and it wasn't bad.

4. My bad days I made sure to plan nothing but resting, reading, watching TV and allowing my body to recuperate as it needed.

I had 6 rounds of TC 3 weeks apart and did very well.  I did have diarrhea after the 6th round as I was told the effects on the stomach were cumulative, but Immodium helped with that problem.  During chemo I did not feel nauseated.

I did lose my hair after the second or third week, but had purchased a wig before that and had the wig styled by my hairdresser to match my hair.  I only wore the wig when the grandchildren were around so as not to scare them.  the rest of the time I wore cute hats that looked like fashionable caps - and many people who did not know I was on chemo commented on my "fashion statement"! Check out www.headcovering.com which is where I got the hats - and sometimes wear them even now!

It was doable for me as I did not try to be super woman and accepted help from family and friends.  I am divorced and live alone - but was still able to manage well - in fact I drove myself to and from chemo each time as well as driving myself to get the neulasta shot.

Let me know if you want to talk to me personally about anything else and I would glad to be of any help I can be.

You can do it - just plan ahead and give yourself time to recuperate between treatments!

Judy

BellaJean

Hi Judy,

All I can say is thank you so very very much. This was more than helpful. I would like to ask you a few additional questions. Wha tis the best way to do this..on this thread or through private message. Words cannot express how much it means to me that you took the time to answer and in such detail. 

Bella  

michelle1014

Judy did a thorough job.  My only additional comments are that I did 4 not six and tolerated TC quite well.  I did not do Neulasta or get a port.  My veins handled it fine and my white blood count only dipped once where I had to wait an additional week, but I had a friend in town and over did it not resting enough and staying up too late.  The pre-meds they give you for nausea and side effects work quite well.  The steroid makes it hard to sleep, but you just sleep when you can and stay up when you can't the larazepam helps with sleep.  I also had the same scenario, I did chemo on Thursday, felt pretty good Friday and Saturday and would start feeling extremely fatigued Sunday afternoon and Monday was a stay at home on the couch day I was wiped.  Each treatment the fatigue set in earlier and earlier and lasted longer, but again it was all doable you just need to rest.  I was 50 when I went through chemo.   I also did ensure when I didn't feel like eating and drinking fluids (water, tea, whatever you like) is essential, you need to flush that chemo out of you as fast as possible.  I got lazy or probably more like tired after my 3rd chemo and I didn't drink as much fluids as I should have and I paid for that mistake.  So drink, drink, drink.  I also tried to get as much protein in as possible and that is what helped me keep my blood count up.  Pretty much diddo what Judy said, plan ahead and give yourself time to recuperate.  Also ask you oncologist lots of questions and if you are not comfortable with him/her get a second opinion.  I got a second opinion and I was very happy I did.

judyfams

Bella,

Just click on my name in blue at the top of my reply and you will see where you can send me a private message on my profile page.

I just sent you a private message.

Judy

BellaJean

What a great resource this website is for me. Thanks so much.

I realize I have one big problem. I am a vegetarian; and a lazy one at that. Meaning, I don't get enough protein now. Will have to figure out what to do to keep my protein input where it is now or even get it higher.

Lots of questions, but will bug you all later. I suspect that this thread will be useful to other mature women (like that better than older) who face TC without having much information. Have a great evening everyone. Hugs of  thanks from Toronto. Bella  

Live

Hi Bella, I am 50, I will be starting TC Dec 8th, 4 cycles also 6 weeks 10 weeks after surgery. When do you start yours? To Judy and Michelle great advice, thanks. I am hoping all goes smooth. I do not want a port either. I think it will be much more comfortable.

Robin

BellaJean

Hi Robin,

Still waiting to have the chemo confirmed. There is disagreement about my results; the need for chemo; etc. My MO said "it is a dilemma". If it is a dilemma for her can you imagine what it is for me. Not the best MO but having trouble getting someone else. Long and not good story and a diversion, so back to our TC questions.

My MO, the not so good one, said that I'd have 4 infustions two weeks apart. I noticed that everyone on the Boards seems to be every three weeks. What is your schedule?

Who knows, I may be starting right around the time you start. If so, we can be there for one another to share, support, and exchange ideas. That is along with the help of our friends, like Judy Michelle. Ladies, I have to tell you that I feel much better I may not be entering a dark dark place in order to get something to hopefully keep me safe. Thanks so much for your words of comfort and reassurance. Bella      

judyfams

I did not have a port when I did my chemo and did just fine.

Bella I believe that Ensure makes a protein rich version that you might be able to drink.  I have not checked out the label so don't know what else is in there. You can check out the label when you get a chance.

Also can you stock up on soups like tomato, minestrone, lentil etc, that you can buy from a vegetarian restaurant and freeze to eat during chemo.  That was what I meant when I said you will do fine if you plan ahead.

Judy

BellaJean

Hi Judy,

Really great suggestions. And I love to plan and organize. Now that I'm not working, I can make me my own project. Have started a Honey-Do-list for this based on your ideas. I'm the Honey and I will do. Thanks again everyone.   

Bella

Live

I will be here for you Bella, I am having them three weeks apart. It gives more time to bounce back. We will get through this together. Judy did you have TC? I think with just 4 treatments it will be more comfortable with no port. Good to hear you did fine. BTW I lived in Bergen County for most of my life. I'm in Fla now.

Robin 

SpecialK

Ladies about to start chemo please look at the Tips for Getting Through Chemo, and Shopping List threads under the Chemotherapy tab.  Tons of good advice.  I also recommend icing your fingers and toes (I used bags of frozen peas) during the Taxol or Taxotere portion of your tx to prevent lifting of nails.  It is a rare side effect but very debilitating.  Also I supplemented with B-6, L-Glutamine and Acetyl L-Carnitine to try to prevent neuropathy from the taxane.  These were approved by my oncologist prior to chemo.  Judyfams list is excellent.  I also took Claritin an hour before the Neulasta injection, and for several days afterward.  The antihistamine helps with edema in the expanding bone marrow so hopefully, less bone discomfort.  I am 55 and about 4 months out from the end of chemo. I also recommend joining a thread for the month you start chemo - since everyone is going through the same thing at the same time you make some very close bonds - we were each other's cheerleaders, and shoulder to lean on. The threads for your specific drug combination are very helpful too. Good luck!

judyfams

Robin 309,

I did have 6 rounds of taxotere/cytoxan - each one 3 weeks apart.  Luckily I did not have any bad side effects like nails lifting or neuropathy.

I really think the good nutrition, plenty of fluids and a positive attitude go a long way in getting through these treatments. 

Judy

dlb823

BellaJean, I had TC x 4 in 2008.  My experience was very much like Jean's.  I had my infusions on Wednesday, and Friday night, Saturday & Sunday were my worst, flu-like symptoms.  Lost my hair, of course, but while wig shopping I actually discovered a hair color I liked much better than what my stylist was doing for me at the time, and am still doing that color on my new hair.  I didn't have much nausea -- in fact, just once that I recall, after eating some fish tacos.  My worst SE was fatigue and severe muscle weakness.  By the end of chemo, I could hardly climb a flight of stairs without difficulty.  The other little problem I ran into was managing to get sick (like bronchitis) shortly after my last infusion, which took forever to shake and had me feeling really miserable.  So my best advice if you decide to do chemo is to do whatever you can to prevent something like that from happening.  Other than that, if you decide to do chemo, I'm sure you'll get through it just fine.

But have you had the Oncotype-DX to even know if the benefits of chemo outweigh the potential risks for you?   It seems like that test might yield some very important information to help with your decision.     Deanna 

Chevyboy

Oh Wow Bella, I found you!  I am so glad you started this thread, and that these women can help you! 

Not knowing what is going on is almost worse than the initial diagnosis.  But you can take charge, armed with all of this information, and help those Docs make the right decisions for you.  Just whip them into shape!

Thanks gals, for being there for her...Thanks Robin!

And Bella, tell Savanah Good Morning!

I found a play-mate for her!

BellaJean

Hi Robin,

Love your playmate for Savanah. A friend of mine wanted a dog until she babysat Savanah. Then she wanted a ragdoll. I put her in touch with the woman I got Savanah from and now we hav Dusty next door. Dusty could be your baby's mama. She looks so much like Dusty. And I must say that Dusty is a real character. Still playful like a kitten and is a full grown ragdoll. I tried to wake Savanah to say good morning. But she is curled up on our bed, fast asleep so all I got was a loud meow...meaning leave me alone.

I have been checking both threads for information about TC. As for whipping the Docs into shape, I don't see that happening. Given my high onctotype score I know I will do chemo. What has been so hard on me is that the story has changed and changed, and never for the better. I wish that they had just said we won't know anything until the oncotype results are in. Now my MO is even questioning if my score is valid because my hospital path has me as low ER+ and the oncotype results have me as ER-. I get a second opinion on Wednesday, but have made up my mind that with a score of 48 (and the oncotype folks feel that is an underestimation because of my ER status) that chemo it is for me. So, I gather information from you experts and change the conversation in my head from no chemo to thank G-d I got the oncotype testing done.

Sorry for the long reply everyone. After reading many posts, I know I am still one of the lucky ones. So many women have such a hard road to travel. Wishing everyone a day filled with easy challenges. Bella 

BellaJean

Ugh Robin,

Meant to ask what is your baby's name and when did you get her. I got Savanah as an adult from a breeder. I wish I had had her as a kitten, but then again I feel good that I got her at all. She is such a great addition to our family. Cheers, Bella

Live

thanks for all the great advice and tips ladies! I just found out today I will be starting this friday the 26th! I will be going out with my list tomorrow. It just keeps getting longer and longer! I will let you know how it goes....

  

asmd

I had TC this summer at 60. I had a port and glad I did it. Unfortunately, I didn't have such an easy time of it. My mo assured me I'd sail thru, since I'm in good shape, exercise, no comorbid conditions. I didn't think my counts would drop, so opted out of neulasta first round. Almost got hospitalized with WBCs wiped out and fever.  Neulasta every round after and no pain. Chemo on tuesdays;  wed usually ok, but really sick wed night-sat, when I'd start to feel better. Had the rare side effect of neurogenic hypotension, and my bp was anywhere from 70/40-80/50. Became seriously anemic and was eating hamburgers for breakfast. I worked the second and third weeks of each cycle. Nausea for the first week after chemo which responded to the meds, which by the way, cause bad constipation. Drink lots of water- I drank 64-90 oz first 3 days to flush drugs out. If they put emend in your infusion (an anti nausea drug) it interacts with decadron (the steroid you take for three days) and  doubles decadron blood levels. I told my oncologist and the nurses about this but they said it was no big deal. (wrong-this is what I do for a living)as a result, I had visual hallucinations from decadron. After first cycle, they cut decadron dose in half. the constipation was unpleasant, but I got around it next cycles with water, miralax and ducolax and I started the later two, 2 days before chemo. In spite of feeling awful, I continued to work out-at slower pace and ride my horse when I could. If I worked out too hard, I got angina-from the anemia. Thrush and mouth sores every round. Couldn't give up the powerful-cancer can't stop me-amazing woman personna.  Well, guess what. Amazing cancer survivor collapses on finish line. Post chemo much harder psychologically. Now I'm 6 days away from prophylactic mx, because I have a genetic mutation and 25-50% chance of second bc. On the positive front, I only lost 40% of my hair (used cold caps) and now it's cut short so the baby hair blends in. Looks pretty cute. I colored it one month out-had three inches of gray roots.

You won't have as bad a time as I did, because my oncologist told me I had the worst se he had ever seen, and he reduced my dose of T last 2 rounds. I read a lot of posts about this before I started chemo, and what i've decided is how well you fare thru chemo is luck. Being physically fit and in excellent health is no protection, and I've seen older more sedentary women sail thru. Good luck. We all get thru it

asmd

Bella- I had 100% estrogen+ on fish testing, but 75% positive on oncotype. My score was 35. My second opinion-head of breast oncology at dana farber told me oncotype is not recognized as gold standard for hormone receptors. The other thing, and this may not be an option for you, is that my tumor was multi-focal, with a couple of 4,6,7 mm tumors clustered together. my MO had them all tested for receptors.

BellaJean

Hi ASMD,

 Thanks so much for your two posts. I am getting so much contradictory information. One oncologist who is widely respected and well known told me that the oncotype results trump the path results. I am seeing a triple negative tumour specialist tomorrow and will see what that person says.

What I do know is that whatever I am it is chemo for me. And that brings me to my next challenge: I am rapidly losing the little confidence I had left in this MO. Lots of errors; e.g. referrals forgotten; test results not communicated. So, somehow I have to get a new MO fast to start my chemo.

One thing you mentioned which got me interested is your comment about a genetic mutation. I wanted to be tested for BRAC 1and 2 as I am Jewish and now have triple negative BC which is associated with the BRAC mutation. I've been told I don't qualify given my age. Anyone out there have a similar or different experience. Thanks again to all of you for being there for all of us. It is raining here in Toronto and I am enjoying listening to the sound of the rain hitting our windows. I find the sounds of nature wonderful to hear. Maybe it is because I live 41 stories above the ground and that is all I hear. Who knows? cheers all..         

msphil

Hello sweetie, I did chemo and rads after being diagnosed at 43 yrs old and while I was in the process of making wedding, (BUT GOD) got me through (Praise HIM) my hair came out about two weeks after starting, but my best friend  had been through chemo yrs before and gave me lots of tips,( thank God) and she happened to be a hair stylist(what a coincidence(I think NOT),so she cut my hair down very short,very much in style, and I brought a wig, which also matched my style and hair color at the time. But when the hair started coming out I was overwhelmed, I didn,t want to walk down the aisle Bald, but it is All past now, as it will be for you if you just keep Positive and have HOPE (Always) for it will take you far, take it from a 17 yr Survivor (Thank GOD) and family and friends, especially my wonderful HUBBY.  msphil  idc,stage 2, 3 nodes

asmd

Where do you live? I qualified for BRCA testing and PTEN ( the one I suspected I had) and they found a PTEN mutation; insurance paid everything. You need to see a genetic counselor and they look at family history. I don't think being Jewish and triple neg would be enough, since you dx is post-menopausal. But if you have a high risk fam hty-a different story.

Like you I had a high oncotype score and I did a lot of research to try and find reasons why it wasn't accurate. And, in Europe, they believe the data isn't in yet to support using oncotype in anything but experimental situations. But-it's the best tool we have. And if you look at your pathology report, you should see descriptions which confirm what oncotyping is saying. eg-mine was grade 3, high mitotic rate, necrosis, comedo- all the bad stuff,  and it showed up 1 yr to the day after a clean mammogram, presented with bleeding nipples. So an aggressive tumor. Oncotype confirmed that, and while the numbers may not  be exactly accurate-high is high. If you're over 31, you'll benefit from chemo.

Your oncologist-you need to absolutely trust him. It's an intense relationship. If your instincts are telling you that your mo is flaky, find someone else. A triple neg specialist is a great idea. If there is an academic center nearby, that's an option.

asmd

Oh, Toronto, I just saw that. Canada less permissive than US with healthcare dollars.

BellaJean

Hi asmd,

so I took a look and my mitotic score is 1; grade is 2; necrosis in absent. Cannot find any reference to comedo. what is that and where should I look? I am doing chemo. I know that now. Just wondering about what I don't know.

Will see MO for that famous second opinion and hoping that that equals a new MO. Let you all know tomorrow how I make out. Wish me luck. And to all of you facing various tests; proceedures; treatments tomorrow...my thoughts and hugs will be with each and every one of you as we go on this journey that none of us want.        

nancyjac

I just joined this forum.  I am 64 and this is my second go round with BC.  I first had it 18 years ago...lumpectomy +radiation.  This time it is suspected to be IBC although my ocologist is still not certain about that....stage 3B because of skin involvement, but scans show no lymph involvement or matastisis.  I am going today to for another biopsy and to get a port cath.  First chemo session is on Wednesday.  

Teakay

BellaJean-

 Your diagnosis sounds a lot like mine! Weak Er+ Pr- Her2-....but I had a mitosis rate of 1 (3 per 10 in high power fields) and and overall score 5/9 on the  scale..so I am a true grade one. 6% Ki67..which is low. Everything pointed to a non-aggressive cancer... however because I am close to triple negative, my MO told me that I had to do chemo! I am 48 and doing six rounds of TC...I have two behind me and four more to go. My next treatement is Dec. 19th. The first week is the worst..tired, weak, queasy,...but I hang in there knowing that it won't last forever and hang onto the fact that the next two weeks I will be feeling good. I eat well, exercise when I can and try to stay positive, although somedays are hard not to just break down and cry. Good luck!! 

BellaJean

Hi Teakay,

Yes, sounds very similar. Only difference is that my oncotype came back really high and also confirmed I am triple negative. So, I am doing the FEC-T cocktail. Three of each for a total of 6 infusions. My second one is on Dec. 19th.

I am in my first week, and having all the SE you describe but like you looking at this as "It won't last forever". Having said that, I'll sign off now as I am getting really tired again. I'll be thinking of you on Dec. 19th and wishing you as easy a journey as possible.   

miffyjones

Hi Bella Jean - have you managed to find a triple negative / BRCA mo SPECIALIST? I'm in search of one myself. Cheers.