Cytoxan Taxotere Chemo Ladies- February/March 2013
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You should be fine getting the bone scan after you start letrozole. Some women weren't even told about the bone scans until after they had been on AIs for years. How can the docs know if you experience bone loss without that baseline scan?
The last round of chemo hit me the hardest as far as fatigue went. I think I just got worn down by all of the rounds. So take it easy, rest, exercise as you can and remember to eat.
I'm doing okay. Trying to find that new normal. I have a full head of chemocurls. If I stretch the curls out, my hair about 3 inches long. Getting the weight off is another matter.
I have met several people who opted for no reconstruction. It's another big procedure and they didn't want to go through it. Some wore foobs, others just went flat. They looked great either way. But most importantly, they were happy with their decision!
Good luck with the nasty neulasta shots.
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Hello all - I just wanted to introduce myself. I had a mastectomy July 1st and will start chemo August 3rd - 4 rounds, 3 weeks apart. My oncologist isn't recommending radiation following my chemo but my breast surgeon is questioning that decision. I had 3 positive nodes. He claims it is common protocol to follow up with radiation. I have to get a second opinion. Just wondering if you ladies had any thoughts? Thanks in advance.
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Hi Suzanne, Welcome to the boards! Have you met with a radiation oncologist? They might be the best source for information. Here's a link for info on when rads is appropriate... including after a Mx.
http://www.breastcancer.org/treatment/radiation/when_appropriate
It depends on the location of the cancer, how much breast tissue remains, lymph node involvement and so on.
Since the cancer invaded the lymph channels and your nodes, rads is recommended.
Hope this helps you!
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Hi Suzanne, pleased to 'meet' you but sorry it's under these circumstances. I had a mastectomy and ALND, 1 of 11 nodes taken was positive. I had a referral from my medical oncologist to a radiology oncologist, even though she presumed there would be no need for rads. My BS also didn't think rads would be required. The radiology oncologist explained why he was sure it wasn't necessary very well and I was quite happy after meeting with him, so I would also recommend you ask for a referral if only for your own piece of mind. In my case he told me that there were good clear margins around the cancer in my breast and the small cancer in my lymph node was fully encapsulated and removed at surgery. 2 sentinel nodes were taken when I had the MX with one positive. I later had ALND and another 9 were taken, all negative. His opinion was that the surgery likely took care of the cancer, and the chemo I had scheduled was bonus insurance.
Good luck, and let us know how you are doing. These people on the boards are a great source of information and support.
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Thank you PoppyK and CatsRus. I had an initial consult with a Radiation specialist when they thought my course of treatment was lumpectomy/radiation. That changed when I did not have clear margins after my lumpectomy. I did make another apt. with him for next week. I was just surprised that my Oncologist and Breast Surgeon had different views on how to proceed. I do think I need a second opinion. It is never ending!
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I was told by the RO that I was in the gray zone... anything 4 nodes and over should get radiation. 1-3 is gray area... after going over my pathology she said she was not recommending that I needed to have the radiation. The reason being my margins were great... it had only gone to 1 node, had 16 others removed which were negative.. she said it would only reduce the chance of local recurrence by a very small percentage. She told me I could have it if it was something that I wanted and needed to be able to sleep at not, but she was not recommending that I needed to have. So I made the decision to opt out... hoping I made the right decision... Its so hard when they won't just tell you what you should have... either yes you need or no you don't. I encountered the same thing with Chemo...which regimen did I want.. I was told you can do AC/T or T/C... good luck with your decision!!
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Thank you Thinking Positive. My oncologist basically said the same thing. I had 3 positive nodes which puts me more towards the "4, radiation" category so am really second guessing his decision. I guess that is what 2nd opinions are for so I need to gather more info. My breast surgeon was pretty convinced that I should do radiation. I have some time to figure it out. I just don't want to ever have to go through this again! It has been a nightmare as you all know!
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Hi Suzanne, I'll weigh in on this, too. In 2013 I had a bilateral mastectomy (cancer in both breasts) and was told by my medical oncologist that radiation wasn't needed because I had a mastectomy (no lymph node involvement at the time). I never was referred to a radiation oncologist. What went wrong for me is that I didn't have clear margins on the left breast so I had to have an additional surgery one week after the mastectomy and they said they got it all. Here I am 2 years later with a recurrence in the same area where they had to go back in to get the clear margins. My new surgeon's theory is that they didn't get it all the first time around. Now it is in my lymph nodes, too. I've had to have a lumpectomy, chemo, and I'll be starting radiation in a week. My thought - do whatever is necessary to avoid it coming back. You don't want to be back on these boards in a few years!
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klanders...did you also have chemotherapy after surgery two years ago? My BS also is confident I have clear margins. I had a microscopic trace of cancer in one lymph node. I also want to do everything from it coming back!
To everyone finishing up chemo and ringing that bell, congratulations! I bought a white cow bell at Joann's to ring and leave at the infusion center for others to ring after their last chemo. I read on these boards that some were able to ring a bell when done. When I had my last TC on July 8 I "quietly" rang my bell to celebrate! The infusion center did not have a bell to ring and had not heard of it. The other location gave out certificates after the last chemo. The nurse explained that she was concerned about other terminal patients who will never be celebrating such an accomplishment. I never thought about it from her perspective and I took my bell home.
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bbpie, others here have asked me if I hit the gong at the chemo clinic, but I learned it had been moved to the radiology department on another floor. I think it was for the same reason, consideration of others who were terminal. There is another women on the same regime as me and same timing so she was done on Thursday too. I've talked to her every chemo day and we keep in touch in between too. I had thought of getting a couple of balloons to take to celebrate but when I was there for chemo #3, the man in the bed next to me said he'd be there every month until it took him.... so I decided to celebrate quietly and as inconspicuously as possible.
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klanders....I am so sorry to hear you had a recurrence. That is frightening. Thank you for sharing your story. I am with you - do whatever it takes so it doesn't come back. I will let you know what I find out in my travels. Radiation Oncologist is Tuesday. Then maybe on to a second oncologist opinion. My BS wants me to see someone in Manhattan.
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Suzanne - I had a double mastectomy w/clear margins and two clear serial nodes on each side. Like klanders, I was told I didn't need anything else, rads or chemo. This was DCIS, which the powers that be don't even want to call "real" cancer anymore. 2 years later the cancer came back in a lypmh node under my collar bone. This was 4 months after a totally clear MRI. The second time I did neo-adjuvent chemo, ALND surgery, chemo after surgery w/different drugs since the first chemo didn't provide a pCR, and last but not least, radiation for 4 weeks. Sure hope it's gone, but I am now a believer that it's only gone at the present time, and there are no guarantees.
Note - I'm HER2+ and ER/PR negative, so there are no 5 or 10 year continuation drugs for me. That may make a difference in the doc's recommendation since most of you seem to be hormone positive and HER2 negative.
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klanders: did you have chemo back in 2013?
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Thank you MinusTwo for sharing your story and I am so sorry that you also had a recurrence. It is scary enough to go through this once but twice! I think I would rather have the radiation and be on the safe side, then skip it. I hope you are done with it once and for all!
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Hello All,
Thank you for sharing your experiences. It is encouraging to see so many of you "graduating" out of TC!
I start Wednesday the 22nd. I will be fasting with the approval of my oncologist for 60 hrs before and 24 hrs after. In general I am scared of the unknown and will simply be relieved to put this chapter behind. I have seen mention of chemo kits - comfort items that you take to your chemo sessions. I have not been able to find specifics. Could someone please let me know what I should take?
I will be having 4 sessions, 3 weeks apart followed by tamoxifen.
Thank you,
Thunder7
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Thunder, Go to the May Chemo thread and read from the beginning. You need to be prepared. It is NOT a walk in the park
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Thunder, why are you fasting so much? I was told to eat. Chemo depletes your energy, I cannot imagine doing it without food. Much as I've tried to eat good things, I've eaten anything rather than nothing.
As MySunshine suggests, read the May chemo thread, and good luck to you
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Thunder - below is the link w/a full barrel of tips & tricks. I too am concerned about the fasting. Many of the SE's of chemo make you very weak, and I would think fasting would make that worse.
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Thunder, Make sure you stay hydrated. It will make everything easier. I brought my DH, a book, magazines, snacks with mild smells and flavors, comfy fuzzy socks. I rested and watched silly movies. The meds made it hard for me to concentrate, so I talked to my DH and looked at the magazines mostly.
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Mysunshine4 thanks for the idea, looked over there lots of good info.
CatsRus and Minustwo, thank you for your concern regarding the fasting. I have done much research on the work of Dr. Valter Longo with USC on the subject. My oncologist smiled when I told him I wanted to follow this protocol. It turns out this fall he will be doing a clinical trial on fasting. So he felt very comfortable with my doing it now. The human trials so far show much reduced SE (no or little fatigue, no chemo brain, no or little GI symptoms), and after the 24 hr. wait for refeeding, the immune system immediately rebounds. (the 60 hrs. was my choice, it is a breeze from me to fast if I don't eat after waking up.) The added bonus to the fasting is the healthy cells go into a protective mode and the cancer cells weaken because they do not have the glucose to feed them. Making the cancer cells more susceptible to the chemo.
Minustwo, also thanks for the link.
PoppyK, thanks for the tips! I will definitely stay hydrated. Right now water is my friend :-)
Thank you all!
Thunder7
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Very interesting Thunder. Sounds like you are an ideal candidate to try the fasting... I have a hard time fasting between breakfast and lunch! lol. I have been encouraged to eat and drink (especially drinks with electrolytes) as my blood pressure plunges after chemo. Good luck to you and please let us know how it goes.
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No, chemo wasn't recommended for me first time around because oncotype scores were low - I think 9 and 14 or something like that. So first time it was bilateral mastectomy/reconstruction and then I foolishly gave up tamoxifen after a few weeks because my side effects were awful. I wish they had suggested other alternatives for me or that they hadn't let me give up on it so easily.
Got bad news yesterday. The doc who read my PET scan in February missed two active areas of cancer in lymph nodes under pectoral muscle and mammary area. My radiation oncologist caught it and sent me for another PET scan and those two areas of cancer are still alive and well - seemingly unaffected by the chemo. That's on left side. She wants me to have a biopsy of two suspicious areas now on the right breast lymph node area.
The nightmare continues. But don't let this be a discouragement to all you first timers. The recurrence rates are low. I'm just the lucky one who tried to do supplements instead of tamoxifen. The doctors have made mistakes - but so have I.
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klanders....((hugs))
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Congratulations Cats and Mysunshine! Can't wait to be in your shoes. Have my 3rd (and 2nd to last on Monday). Counting down.
Welcome Suzanne, I'm about 2 months ahead of you if you have any questions am happy to help where I can. (I haven't yet heard if I'm getting radiation so can't help there).
xoxo to all the sistas!!
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Thanks Rebecca. #4 hit me hard. No pain, nausea, etc., (thank goodness) but my blood pressure continues to be low and my energy is non-existent. I've spent most of the last week laying in bed, and mostly asleep. When I am awake I try to eat and drink as much as I can (feel like I'm floating at times!). I am getting very frustrated but trying to tell myself it will get better from here. I am supposed to start Letrozole at the end of the month, but my MO told me I can delay if I don't feel well enough.
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You can do this Cats! Look how far you've come! I don't know what Letrozole is, will research that. I wish learning all of these multi-syllabic words helped my vocabulary!
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Femara is the brand name for Letrozole....Sorry...
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catsrus: hope you are feeling better in a couple days. Have my 2nd TC treatment next Thursday. I am hoping my SEs are minimal like the first time. Never know though. Take care
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Klanders, ((Hugs)). Sorry you have to go through this.
I think it's great that you shared what you are going through. It helps inform and educate us.
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CatsRus, Me too. Very tired, no energy. I am having trouble drinking all the water I should....trying. Going in tomorrow for bloodwork and fluids. One day at a time.
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