Starting Chemo July 2012
Comments
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Life - that's terrific news about your essay, congrats!
Susan - I am glad that you took a few days to think and you are 'at peace' with your decision
Today makes 9 days post chemo for me. I had Herceptin on Wednesday and now I do not go back until the Monday after Thanksgiving. It is certainly a strange feeling to not have one single doctor's appt next week. In an attempt to feel normal I called my principal this morning to let her know that I will be returning to work on Monday, 11/19. I'll work for three weeks and then go out on leave again for the exchange surgery on 12/10.
In radiation news, I met with the rads onc again after obtaining a second and third opinion. It appears that with all the pieces of my puzzle - age, hist grade, double mastectomy, sentinel node involvement (1), chemo, Herceptin, Tamoxifen - that my chances of recurrence are approx. 10% The radiation will lower the chance of local recurrence by 2% but will not impact other recurrence rates. My rad onc and med onc say that rads or no rads will be considered a reasonable choice for me to make. That being said, I am leaning more towards no rads for me. My hubby has been encouraging me to make a decision before I return to work so that I can stop losing sleep over this and try to "feel normal" again.
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skimmommi, I PM'd you my work/disability story. Didn't want all those details on the public forum.
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Hi Ladies - skimommi - Your question about working and chemo is difficult, but I would STRONGLY advise you to apply for STD and see how it goes. Chemo drugs affect everyone differently. Look at Susan and Madelyn. Susan has found Taxotere harder than AC, and Madelyn seems to have done much better on Taxotere. The decision to work or not to work was taken out of my hands by my oncologist. I work in a hospital, and she said I couldn't work because of the risk of infection. I could maybe have worked the 3rd week post chemo, but it is a good thing the Onc told me I couldn't, as with my second Taxotere at the 3 week mark when my white cells should have been at their highest, they were only 0.65. I would have been in serious trouble coming into contact with patients!! Tell your boss you will see how you manage before committing yourself to working, throughout the treatment. I don't think the gym is a great idea. The place must be swarming with germs with all those people sweating and breathing hard. I had horrible SE's with Taxotere, but I wish you minimal SE's.
Susan- I have long suspected that you are driving yourself too hard. I had the same work ethic. My motto was "Get up, get going and get over it"!! Unfortunately this time it didn't work. Please be kinder to yourself more often and take some time off sick - your body needs time to heal. I am glad you are at peace with your decision about the breast. It is hard I know - big hugs!
Ann - You are not the first person who has mentioned their hair started growing after AC whilst still having Taxotere, yet those of us who have only been on Taxotere still don't have hair 6 weeks post chemo - weird!
emilybrooke - good luck with your decision.
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Hey All - super news! No radiation for me!!! It was a definite no, not even a grey area!
In case anyone wants more info, here it is:
I am being treated at The Cleveland Clinic. I had IDC in right breast, tumor was 2cm, ER+, HER2-, stage IIA. I had 8 lymph nodes removed. 1 sentinel node has 0.33mm of carcinoma. I had a bilateral mastectomy and 8 rounds of chemo: 4 AC and 4 Taxol. And will be on Tamoxifen for 5 years.
My radiation oncologist said they look at lymph node involvement, size of tumor, biology of the tumor and margins when determining if someone needs radiation. I was good on all counts. He said he will typically recommend chemo if someone has 15% change of recurrence or higher, and mine is under 5%.
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roadwarrior - what fantastic news!!! Does that mean you are all finished with your treatments now?
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Maddie57 - well, with the exception of Tamox, yes!!
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Road - that's amazing news- Congrats!
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Road warrior- Yay! Great news!
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Congratulations, roadwarrior!
Maddie57, not sure if it makes a difference but it's Taxol I'm on now, not Taxotere. The odd thing to me is that it started growing in the three weeks after AC #4 before starting Taxol, while it had never started growing in the intervals after the prior AC treatments. It's like my hair knew AC was done-- or it had just become immune. Kind of scares me-- I hope early hair return doesn't mean the chemo isn't working so well on the cancer. But I sure enjoy having a bit of shadow on the head instead of a blindingly white dome!
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Hi Ann, I looked up Taxol and Taxotere - they are very similar. Please don't think your hair is growing because the chemo is not working. I read somewhere else - can't remember where about the same thing. Was it you Madelyn that said your hair started growing after AC whilst you were on Taxotere?
road warrior - sorry about the Tamoxifen - hoped you were totally finished now. I am still on Herceptin, but it makes a change to have only an hour in the chair instead of 5 hours! Do you take Tamoxifen in an infusion or in tablet form?
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Hi Ladies - remember stride from our thread? She wasn't doing so well, but just wanted to let you know she has had successful surgery, and they removed 5 lymph nodes which were all clear!!!! Isn't that great news.
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Great news Road! Yeah! And Emily--almost ready to make the final decision. Congratulations.
And so glad to hear about Stride! YEAH!
I am on Taxol--not her sister Taxotere. After 6 treatments with Herceptin no hair on my head yet. Just prickles. Annoying prickles. Eyebrows almost gone and very faded. And as of this morning--28 eyelashes total. Both eyes. Yes. I am counting. I admit it. I am shallow.
Skimommi. I have worked up every day up until this week when I was sent home from chemo and told to stay home for the rest of the week. But, I have an advantage. I am dean of health in a health science center. There are several labs, simulation rooms with beds, and mock living areas for teaching with beds. I can find an empty bed any time any day and take a nap. I have my favorite quilt, a pillow, and can often find a semi-therapy dog to join me for a nap. My faculty/staff/students knows if my car is in the lot and my office door is open and no one can find me--I am napping. Will set my phone for an hour or so and return. My office is protected by my "guard dogs" at each end of my hallway. If anyone tries to see me and they detect a glimmer of illness they are sent away with a stern warning. My chemo is on Wednesday in the morning. I sleep through it (thanks to the Benadryl) go to my office for a couple of hours then home. I gave up teaching my psychiatric nursing class as the clinical component required me to be in an acute psychiatric facility and a juvenile and adult detention center. Thought the medical oncologist was going to choke to death when I asked him if I could continue teaching the class. I found humor in asking.
But--my working does NOT mean everyone can work. Some members of this forum have been able to exercise. I am short of breath from my car to my back door. I seriously consider if I need to walk down an aisle in the grocery store. Transfusions have been discussed--but I have had so many other side effects lack of breathing seems to have fallen aside
. You need to evaluate what you do with your MO and go from there. In reading the posts, it seems it is best to apply for disability early.
New Mexico is having nasty dusty weather. I could not see across the street earlier today.
A w/end free of SEs to my friends.
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Hi Skimommi - I didn't miss a day of work during chemo. I was very very fortunate in how my body handled chemo. For me mentally, maintaining a normal work routine was really important. It was a great way to distract me from the disease and it was one of the only places I felt "normal". I scheduled my chemo for Thursdays, which meant the worst side effects hit Sat and Sun. Mondays and Tues were rough, but by Wed and Thurs I was feeling better. I was not one of those incredible women that was able to keep up the workout routine (I envied those that did!). I was able to walk but gave up on the regular routine. I did feel god enough after the 4 or 5th treatment to get back into a strength training class. By then I knew my side effects timing well enough to know exactly when I could work out. Hang in there - you will make it through this and be back to normal life before you know it.
PAeaglesfan - thanks for the great advice on rads - love the idea of breaking things up into smaller chunks!
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Road Warrior and Emily-how wonderful to be done! xoxox
Maddie57-my hair started coming back around Taxol #6, it's light but HAIR is HAIR I'll take it. Eyebrows and eyelashes are amost gone. I watched some great Youtube videos about applying makeup/eyebrows during chemo. Thank you for the good news about Stride
Susan-wow, you may not think you are exercising..but that schedule is amazing with all you get done!
TeeBallmom and Whaevah-we are getting close aren't we.
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Hey ladies has anyone checked out Look Good Feel Better from American Cancer Society? It's a free program for women going through chemo. I went and you get a free bag of really nice makeup and they teach you tips for applying it, penciling in brows and lashes, tying scarves, etc.
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Hello, This is my first post. I started Chemo on July 11, but only just found this board today. My chemo ended mid-September. Though I feel a lot better physically, I am still really blue. It seems hard to get out of bed and to find meaning in my life. I just don't seem to care as much about anything anymore. Is anyone else experiencing this?
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Hi Melanleb
Sounds as if the audio I listened to on Doc radio will be perfect for you. Search for Doc radio on Sirius. It is based @ Langome Medical Center in NYC. It was around Sept 14th on either the oncology or psychiatry segment that week. I have already spoken with my therapist about the woman talking about depression lasting much longer than expected (she was well past the 5-year mark) and how others expect you to return to normal. But-normal is before breast cancer and that is just impossible. Factor in chemo brain (I admit to having it each and every day) AND the expectations we have for ourselves.
Anyway-if you are not seeing a therapist you might consider making an appointment to disucss your feelings and consider an anti-depressant.
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Hit submit and meant to hit spell check. Another example of chemo brain.
Anyway-I may forget to check my list each day or to turn off the coffee pot but I do NOT forget to take my antidepressants. Maybe because I set an alarm on my phone to go off every day at the same time to remind me to take my medications. Someone asked me if my anti-depressant was working. I said I was not sure--because I still got sad and depressed (breast cancer and $*%&& walking out the day port was placed and leaving me in a BIG mess) but I was not willing to stop the drug to find out. I also have a benzodiazipine to help with the times "life" overwhelms. I can take half of the lowest dose of this medication and feel better almost instantly-so is probably a placebo effect. No matter, it helps.
Best wishes.
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Thank you ladies for the feedback. Itsalltemporary I am striving to mimic your story and have in mind that I will take long weekends and work through the chemo. I work in an office and fear the germ factor. Is that a major factor the entire time you are taking chemo, or more so just for a time frame following each sessions when blood counts are lower?
SusanHG123, I grew up in El Paso, Texas. I sure don't miss those dust storms.
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Melanieb - I go to a support group every week near me and am so grateful for that. We talked about how you can feel after chemo is over. The facilitator said it can be like PTSD. After chemo - or any other milestone with treatment - you can feel all the things you're been suppressing to just get through. You can suddenly feel all the loss, all the pain, all the mourning you may not have allowed yourself to feel. And it can happen right after chemo or months or years later. I just finished chemo just over a week ago and it crashed in on me. And I'm sure that won't be the end of it. We have been through a war. And though the people around us love us, they can't understand what we've been through.
I agree with SusanHG123. Find support, find a therapist. Usually, the hospital you have your treatment through have some kind of support group or therapist. I never thought I would do a support group but I have found it invaluable.
For anyone out here in Los Angeles, I cannot recommend WeSPARK in Sherman Oaks enough. They also do the Look Good Feel Good events and have tons of free offerings for cancer patients, including yoga, energy work, support groups, etc. -
Lifeonitsside and Susan HG 123,
Thanks for your responses and your suggestions. It's really helpful and nice to know that others are going through the same things. It's hard to feel connected sometimes. I will take a look and see what support groups I can find in the area. Again, thank you!
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Mamabr,
I finished chemo about 6 weeks ago and am experiencing exactly what you describe. People do expect me to be back to 'normal' and I am nowhere close. It's really hard to explain since most people really have no idea about what chemotherapy involves. The physical side efects are certainly less for me now. But, the emotional ones are certainly still there. I am 39 and pre-menopausal, but the chemo put me into menopause and I am waiting to see if that is permanent or not. There is so much uncertainty. But, it does help to talk to people and be around others too. Good luck!
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Hi melanieb - Thank you for the support. I think I am going to try and go to our local cancer support center in the next few weeks, hopefully before ending chemo. With the holidays approaching I think things are going to get increasingly demanding because of family dinners, etc. I knew Thanksgiving was going to be tough because of extended family dinners, so I made plans for my family, 4 of us, to go out of town (with the dog too). We are driving to visit a college both the kids are interested in, football game and r&r. I have already received backlash. But I'm not going to feel guilty. It's 5 days in a row that my kids are free, no homework, no sports and no doctors. I just don't want to be at home and I just don't have the energy to listen to Uncle "Joe" talk about his gout or his trip to wherever.
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Hi Skimommi - I forgot to mention....not sure if you are getting neulasta - but it was a a real benefit for me. I had my chemo on Thurs, then got a neulasta shot on Fridays. I would have some bone pain - but was managable with Claritin and 3 advils. It kept my white blood cells in the acceptable range (they did drop over time - but I never had to delay a treatment). From what I have read, so much depends on the individual and the chemo cocktail. I had Taxotere and Cytoxan for 6 treatments. I have heard that the "A" (can't remember what it stands for) is a bit harder on the body in terms of side effects, but many doctors prefer to use it in the mix. With regard to the germ factor....I was really careful. I washed my hands often and steered clear of sick people and salad bars. I didn't travel on air planes (the recylcled air wouldn't be good). But I didn't go crazy with hand sanitizer. I pushed the limits once during treatment and ate sushi. I was told not to because of the risk of bacteria (I just couldn't help myself - I was craving it!). I paid the price - it hit my digestive system pretty hard for about 5 days, then I was fine.
Sounds like you are doing lots of reading and preparation. You will do great!
mambr - Re: depression after chemo - so weird - I thought I was the only one! I had expected to be celebrating and jumping for joy when I was done with chemo, but when the day came I was the exact opposite. It was like I was afraid to be happy. Started obsessing about my chance of recurrence. Felt like I was on the verge of tears for quite some time. Finally, after about 2 weeks the black clouds lifted.
Finally getting back to normal (at least mentally!). Now, if only my eyelashes and eyebrows would start growing. I have become the queen of eyepencil. Starting to mirror the Kardashian women in how I apply my make up! Heavy eye pencil to detract from my lack of lashes - tee hee hee! Oh and the hair.....I am thinking that by Valentine's day we should have some decent hair - right?
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ditto on the Neulasta, worked well for me too.
I hope the depression goes away. I'm trying to keep it at bay. I guess just taking one day at a time is good too.
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Melanie - Hi and welcome to the board! I started seeing a therapist one month ago and also started a support group last month too. It has helped so much. I was very down during the treatments and now that treatment is over, I am experiencing a little anxiety about what "normal" is now.
Mamabr - backlash? After the year you've had! :P on them. You deserve the R&R and time with the kids. Enjoy!
Road - I participated in the Look Good program wwhile I was in the hospital for my surgery. The bag of goodies is awesome and actually turned me on to some products that I had never used before. I just wish I would have paid more attention to the application process - I am a total spaz when it comes to makeup.
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Itsalltemporary how did you skip the 'A' part - which stands for adriamycin by the way. My current MO said the only way I could take TC and not the TAC is if I participate in a study. However, even if I sign up for the study they basically flip a coin and decide whether I get to take the A or not. He also explained the A is a little harder. I had talked myself out of the study, but I'm getting a second opinion anyways so we shall see what the new MO has in store.
I can only imagine after this taking up so much of everyones life for the better part of a year, it must be hard to find a new routine. Can you join a "survivor" support group?
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Life on itsside==-What exciting news about your essay performance. I get the feeling that we have a number of creative people in this group. Have you published it on the web for us to see?
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Hi Emily, Thanks for your insight. It is helpful to hear that others are going through this too. Are you working now or did you take time off? I am still working and it is helpful in some ways, but harder in other ways.
Hope you have a good day.
Melanie -
Melanie - I did not work during the treatment. I am a middle/high school English teacher. I was diagnosed in May, surgery in June, and started treatment in July. I have missed 2.5 months of work and will be returning next week, which is 2.5 weeks post chemo. I am going to work for 3 weeks before I go out on leave again for my exchange surgery. Then, I hope to return to work by mid-January. I elected not to work because I was fearful of the kids' germs. Thankfully, I had enough sick days banked to use so I did not have to go without pay - such a blessing. I am still concerned about the germs but I need to feel a little normal which is why I am going back for what I am calling a "limited engagement"
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