Preventing chemotherapy without evidence
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Topic: Preventing chemotherapy without evidence
Posted By: tofu
Subject: Preventing chemotherapy without evidence
Date Posted: Apr 01 2008 at 3:29am
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This website is always helpful for me when I feel lonely, and every day I check your messages and get a lot of knowledge about the triple negative breast cancer, thank you.
I have noticed many of the members have done the chemotherapy for preventing the recurrence. My physician suggested me the further chemotherapy, e.g. Binorelbine (Navelbine), Capecitabine (Xeloda), or TS-1( oral medicine like 5-FU, not yet approved by FDA ) for preventing relapse and metastasis, because he concluded my EC-T neoadjuvant therapy was not successful. When I started the half year neoadjuvant ( 4 sessions of EC and 12 sessions of weekly Taxol), I had a 7.0 x 6.0cm triple negative tumor and an enlarged lymph node in left breast on CT images. After that I had skin/nipple-sparing mastectomy and breast reconstruction by using DIEP flap on Feb/2008 and got the pathological diagnosis on Mar/2008. IDC, TNBC, Size 4.7 x 2.7cm, grade 3, 0/13 lymph node, no lymphovascular. I got the second opinions from two oncologists. The first one opposed the further chemotherapy without evidence before relapse and concluded that my EC-T therapy was enough. The second one thought EC-T was successful if my enlarged lymph had been positive and EC-T had made my positive lymph nodes negative, but EC-T effects were unclear if my enlarged lymph had been negative. He advised me that I could decide either, doing further chemo or not and he explained three medicines and their main side effect. Binorelbine -> inflammation of vein, Capecitabine -> Hand-foot syndrome, TS-1->Marrow suppression. He also said that the chemotherapy hadn not a strong evidence for preventing relapse but their response rate (RR) was better when they were used earlier. They are second or third line medicine for recurrent breast cancer and single use RR is 10-20% but RR of first line is around 40%. Now I have numbness of hands and feet and inflammation of vein by EC-T which was finished more than two months ago. I am afraid of the further chemotherapy because of more side effects, but I think my recurrence rate is around 50% (min.25-max.75%) by my tumor type and unclear EC-T effects and my doctors agreed that. Single use Binorelbine , Capecitabine, and TS-1 are not so attractive for you but we have the limitation of our public insurance system and the slow anticancer drug approval in Japan. I long for the more attractive anticancer drug and combination. I am still thinking but tentatively selected Capecitabine (Xeloda) and the chemotherapy will start after my recovery from the numbness. And I requested my physician it would stop when I felt a side effects so hard. I will send my progress report of my preventing chemotherapy without evidence and wait for the members' experiences and opinions. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Replies:
Posted By: cg---
Date Posted: Apr 01 2008 at 9:29am
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Good Day Tofu, It is a big decision...but at least they have presented options. Xeloda apparently is quite effective for triple negatives. I found one member of this site (Joan2844) who had Xeloda as follow-up chemo. Perhaps if you sent a private message she could tell you her experience. If you are worried about the side effects...Johns Hopkins is currently doing testing on Xeloda...because it is still effective at a lower more tolerable dose. The manufacturer's suggested dose is being "fine-tuned" by the wonderful women taking part of the study.
Perhaps Joan2844 can help you by providing more information or studies regarding followup chemo.
We know how agonizing the decisions are and hope we can act as a sounding board for you to "think out loud" , also to provide personal experiences and possibly some research studies we may know about.
Please let us know how you are doing.
Connie
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Posted By: tofu
Date Posted: Apr 02 2008 at 4:36am
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Thanks Connie,
I would like to send a message to Joan2844 and hold our information in common, if she agrees with me. I am not alone. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: tofu
Date Posted: Apr 05 2008 at 12:49am
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Dear Connie, and everyone,
I sent a private message to Joan2844 from the member list. Is it right? I am well now, and take a long walk under cherry blossoms every day. Thank you for all. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: cg---
Date Posted: Apr 05 2008 at 3:28am
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Good Morning dear Tofu,
I hope you get a reply soon from Joan 2844.
I am happy you are feeling better....spring and flowers bring joy to everyone who has spent a long, cold winter.
Please let us know how you are doing.
Connie
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Posted By: Joan2844
Date Posted: Apr 06 2008 at 7:45am
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This is joan2844. Hello, Tofu. I read your full post, and decided to post a response here. You sound very strong and well informed about your cancer and treatment options -- both will help carry you through this storm in your life. How lucky you are to have the cherry blossoms -- what a beautiful place to reflect and heal. It sounds to me that your treatment is all finished, and you are considering more chemotherapy as "insurance" against a recurrence? That is pretty much the situation that I had. My chemotherapy and surgery were done 2 hours away from my home, and we have three small boys (now ages 15, 13 and 8). I had chemotherapy before my surgery. Six rounds of TAC (taxotere, andriamiacin and cytoxane). After the surgery, my oncologist said that I had a "partial" response to the chemotherapy, meaning that it had not totally "melted" away my tumor. Since that time, I have read that pre-surgical chemotherapy rarely gives a "complete" response. Partial is more the norm. My oncologist wanted to do some follow-up chemotherapy "as insurance." He had me complete my 36 treatments of radiation first, because he said that was proven, effective treatment. Follow-up chemotherapy was just his professional opinion. Since I would have had to drive to his office for IV chemotherapy of Gemzar and Navelbine (given at the same time) he allowed me to do 7 rounds of Xeloda by tablet. I visited his office for follow-ups every 6 weeks, and had blood work done (results faxed to him) every 3 weeks. I had very mild side affects through out all of my treatment, and the time on Xeloda was no exception. It made me tired. Made my hands and feet itch some, especially toward the end of the treatment time. But overall, it was very tolerable. My oncologist was vague about suggesting the Xeloda and had only a "best guess" about how long it should be prescribed for me. I think he was reluctant to say anything definite because there are no studies that prove follow-up chemotherapy will keep a woman from recurrence. But, he did say that MD Andersen was doing some studies about the benefits of follow-up chemo -- he said he would rather have followed their lead in my case than wait to get the "official" results. He knew that I was healthy, trustworthy (to take the medication on my own) and had tolerated the other treatments well. At the end of my treatment, he asked how things had gone for me. I answered fine, with only a few complications. We both agreed that I had lost very little by taking the Xeloda, and we're hopeful that I've gained a lot in return!? Cancer treatment is such an inexact science. Trust your doctor. Trust your instincts. Enjoy those cherry blossoms! How else can I help you? If you have found this site, then I suspect you have found internet information about the chemotherapies you are considering? My xeloda was by pill form, so I am surprised you are talking about drinking it? Let me know how things go for you. I want to hear back from you. I am glad that Connie suggested you contact me. ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: cg---
Date Posted: Apr 06 2008 at 8:18am
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Dear Joan, Thank you for your generous and helpful description of the background that led to your subsequent Xeloda usage. Interestingly, I have been reading about keeping triple negatives on Avastin for a year, and other "maintenance" chemo. I think your oncologist should be commended for his proactive position...my old oncologist just dismissed the suggestion. I am about to pose the Xeloda question with my new oncologist. I think it many times, as I read different responses, but I want to put in print.....what a wonderfully supportive group of women that share their lives, treatments, encouragement. I now have to drive over 2 hours (traffic) to my new oncologist, but I feel much safer now having an oncologist actually discuss treatment options. So, Xeloda seems doable from a logistics perspective.
I wish you all the best that life has to offer...
Connie
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Posted By: Joan2844
Date Posted: Apr 06 2008 at 8:26am
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Connie, I would be interested to know your conclusions about Avastin. I thought it was not a viable option for trip-negs? And, it can also cause heart damage? I'm not sure if I'm right about either of those... I find so much information about breast cancer (I love "google alerts"), but find it hard to keep it all straight. As I get further away from treatment, I feel less urgency to keep all the information straight, too. I get the results of my most recent (annual) breast MRI tomorrow... Praying for good news! ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: cg---
Date Posted: Apr 06 2008 at 9:57am
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Dear Joan,
It is called the BEATRICE trial.......I would have done it in a heart beat if I had had the opportunity.
Anthracyclines are more inclined to cause heart damage.
Connie
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Posted By: Joan2844
Date Posted: Apr 06 2008 at 10:09am
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Connie, I found the trial, thanks. The link for it is here http://clinicaltrials.gov/ct2/show?cntry1=SE%3ATH&rank=33 - http://clinicaltrials.gov/ct2/show?cntry1=SE%3ATH&rank=33 . This is not one I am sure I would jump at to do -- sounds like standard chemo is given as well as Avastin. Could be a double jolt to the heart? Avastin was recently approved by the FDA for breast cancer, but with a lot of controversy. Use google "News" to find more information. Joan ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: trip2
Date Posted: Apr 07 2008 at 5:43am
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Joan2844 I sure hope everything goes smooth with your mri results!
Let us know, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Joan2844
Date Posted: Apr 07 2008 at 6:13am
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Thanks, Pam. Acutally, the results could have been better --they found an "inconclusive" area tht sounds pretty
conclusive to me -- it has size, increased vascular activity (tumors need blood)
and a biopsy is schduled for tomorrow (Tuesday) @ 2:15.
The nurse said that MRI's are usually "spot on" for
identifying malignancies... this image is not one that they can (supposedly)
read and make a quick determination from. She said it might be an infection.
Being able to get a good sample tomorrow (by ultrasound) will be
key.
I will keep you posted... And, I am okay with all of this -- early detection is the best prevention, right! ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: trip2
Date Posted: Apr 07 2008 at 6:26am
Oh Joan I'm so sorry. Maybe tomorrow they will find it is b9 or an infection like the nurse said.
We will be with you tomorrow in out hearts. I'm glad they were able to do this quickly so that you didn't have to wait for an answer. You are right, early is better.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: cg---
Date Posted: Apr 07 2008 at 12:52pm
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Dear Joan,
Tomorrow my prayers and thoughts are with you (if you do not mind a little Catholic rosary support during your procedure).
I am also awaiting the results of my scan....will find out results on April 16 - believe me it has been one heck of a wait since April 2.
Please let us know how you are feeling tomorrow.
Connie
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Posted By: Joan2844
Date Posted: Apr 07 2008 at 4:03pm
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Thanks, Connie. I appreciate your prayers! And will pray for you, too. It is a lot of time between the 2nd and 16th. Take each day as it comes... Joan ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: Suzanne
Date Posted: Apr 07 2008 at 7:08pm
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Cg---, you might want to check out my post last week on "Anthracyline-Heart Problem Weak Link". It looks as though the anthracylines may not cause heart problems for triple negative women after all.
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: cg---
Date Posted: Apr 07 2008 at 7:31pm
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Hope springs eternal.....I took the Co-enzyme Q10 - as insurance. But, I am pleased to see that my heart is one body part that did not get impacted from the chemo!
Thank you for pointing that out to me.
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Posted By: tofu
Date Posted: Apr 07 2008 at 8:07pm
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Thanks Joan,
I am pleased to hold our experience in common, and I pray for you and believe your good result of MRI. I am also very glad that Connie suggested me contact you. Your massages and experiences makes my mind at ease and your oncologist advice gives me the strength for the future chemo. My hospital is belonging to my city university, not best for a TNBC patient, but very close, about 3km from my house. There are good breast surgeons and an excellent reconstruction surgeon and no oncologist. When I have a question about my chemo and side-effects, I go to the other hospital which is 10km far from my house and has an excellent oncologist who kindly answers me and send his advice letter to my breast surgeon. After his advice I thought the side effects of Xeloda were more acceptable than Binorelbine since now I have the inflammation of vein by EC-T and afraid of an implantable subcutaneous infusion port. If I recovered from my inflammation of vein, I would try Binorelbine. My breast surgeon Xeloda regimen is Cycle: Three week taking and one week rest, so-called A-method (B-method is two week taking and one week rest, one time drug dose is more than A-method) Duration: One year I do not know which is better, A-method or B, and feel the one year is too long.. I will ask my oncologist again about the regimen. I have not started my (follow-up insurance) chemo yet. I am waiting recovery from my numbness in a limb, but I promise you and all to report my follow-up chemo. --Joan wrote:-- >My xeloda was by pill form, so I am surprised you are talking about drinking it? Sorry, we are also taking Xeloda pills, drink pills (with a glass of water) is my Jinglish (Japanese-English). ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: cg---
Date Posted: Apr 08 2008 at 1:57am
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Dear Tofu,
I am so pleased you have decided on your plan. I wonder if you are taking anything for your limb numbness? Is it from taking Taxotere?
If there is anything you would like to know or would like to find - just let me know and I will try to help.
Johns Hopkins is currently doing study on Xeloda - different dosages. I think they are finding it is effective at lower dosage - minimizing the side effects.
Connie
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Posted By: tofu
Date Posted: Apr 08 2008 at 4:12am
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Dear Connie,
I apriciate for your help. >I wonder if you are taking anything for your limb numbness? >Is it from taking Taxotere? My limb numbness comes from 12cycle weekly Taxol. It looks like the Xeloda side-effect, hand-foot desease symptom and I am worried about not discrimating Xeloda side-effect from Taxol one and my doctor and I am waiting for the recover. Now my hands have the recovery, and my feet become better. >Johns Hopkins is currently doing study on Xeloda - different dosages. >I think they are finding it is effective at lower dosage - minimizing the side effects. I am interested in the Johns Hopkins study and the guideline for Xeloda of ASCO or other cancer academy. My doctor, breast surgeon regimen is A-type, three week taking pills twice a day, and a week rest. I heard the dosage of Xeloda for one time is 1200mg (surface area 1.31m2-1.64m2, I have 1.5m2) The other hand B-type, two week taking pills twice a day, and a week rest. The dosage is 1800mg = 1.5 times of A-type. I asked my doctor why he selected A-type, and he answered he had not tried B-type, only done A-type. It could not saticefied with me. I think I am too doughtful for my doctor, but I would like to know the reason or references. God bless you, Connie and everyone. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: cg---
Date Posted: Apr 08 2008 at 4:37am
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Dear Tofu,
Yes, I took the Taxol and the "numbness, tingling" they call peripheral neuropathy from taxanes (Taxol or Taxotere). The peak period is 3-5 months after your last chemo treatment and slowly improves.
One thing that is recommended by many doctors is to take vitamin B6. All the B vitamins have impact on the central nervous system...but especially B6 for the nerve endings.
There are strategies to deal with hand-foot syndrome and possibly with the lower dosage it will not even bother you. I will find out more from others who took the Xeloda what they used and what dosage they were on.
I will get back to you with an update.
Connie
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Posted By: Joan2844
Date Posted: Apr 08 2008 at 1:47pm
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When I started Xeldoa, my oncologist specifically told me to take B6 AND to buy the best hand/body/foot lotion I could find, and use it day and night. It was good advice -- I really didn't have any major issues.
My MRI was today... the doctor was able to take a biopsy; about 6 samples. The area of suspicion -- very close to my lumpectomy incision-- didn't have any definite boundaries, so it was hard for him to know exactly where to draw from. I'm hopeful that it is just scar tissue and residual fluid from the surgery, and that this is a "false positive."
He drew more fluid than tissue when he did the biopsy, and that can be a good sign.
He expects the results by Thursday afternoon... ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: jsouthy
Date Posted: Apr 08 2008 at 1:52pm
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I have had 3 rounds of Abraxane (a taxol drug) and so far have had no neuropathy. Would I have it by now if I was going to get it? I really haven't had any bad side effects at all. (not like I did with epirubicin/cytoxin!!!)
Joanne
PS. Love your verse Joan! He is certainly carrying out His purposes in the midst of this trial! AMEN and AMEN ------------- dx 8-06 Triple negative stage 2B 1+ out 19 nodes grade 3 lumpectomy re-dx 1-07 stage 3 epirubicin/cytoxin 3 rounds mastectomy re-dx 1-08 liver, skin, bones mets stage 4 AGE 47 |
Posted By: cg---
Date Posted: Apr 08 2008 at 2:02pm
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Dear Tofu,
There is a cream called Bag Balm - that seems to be recommended by those who develop the hand-foot syndrome and Udder Cream.
I found this very good website on hand-foot syndrome perhaps you will find it of some help.
http://www.cancercare.on.ca/pdfmedicationinfo/Hand-foot%Syndrome.pdfave - www.cancercare.on.ca/pdfmedicationinfo/Hand-foot%Syndrome.pdfave .
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Posted By: trip2
Date Posted: Apr 08 2008 at 2:02pm
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Hi Joan2844 I was thinking about you today and wondered how things went.
So you'll know Thursday, well that's not too bad of a wait.
Yes I heard one of my docs say that getting fluid out of there is a good sign, fingers crossed. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: cg---
Date Posted: Apr 08 2008 at 2:05pm
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Dear Joan,
I was waiting to hear how you made out...six areas is a good biopsy sampling and I pray they are all scar tissue.
Thanks for letting us know.
I have to wait until next Wednesday to find out my CAT scan results....and the waiting is hard.
Connie
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Posted By: trip2
Date Posted: Apr 08 2008 at 2:11pm
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Connie the waiting is very hard. I wish there was something I could do to help you with distractions. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: cg---
Date Posted: Apr 08 2008 at 3:04pm
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Dear Pam,
You help every time I come to the latest of "findings". You have advanced research skills that benefit all of us and I am always grateful!
Connie
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Posted By: Joan2844
Date Posted: Apr 11 2008 at 2:45pm
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Ladies, Received some discouraging news last night -- biopsy results show DCIS. Since I've had lumpectomy/radiation already, this means a masectomy. Considering a double M, just to get this completely behind me. We're doing well... just coping with the news and trying to look on bright side (i.e. found early). Chin up! Joan ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: Elaine
Date Posted: Apr 11 2008 at 5:14pm
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I'm sorry to hear that Joan. I'm sure it's a shock to you and your family. But you're right, chin up. Will be thinking of you!
Lots of Hugs from California!
Mary's Mom
Elaine
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Posted By: tofu
Date Posted: Apr 11 2008 at 6:14pm
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I'm sorry to hear you. I cried a while, excuse me. But you are strong and cool.
I had mastectomy and reconstruction two months ago and I almost recovered in a few weeks. You live far from me, but my heart is always with you and your family. God bless you. Tofu in Yokohama, Japan ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: cg---
Date Posted: Apr 12 2008 at 4:11am
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Dear Joan,
I am so sorry for the latest setback...but I went investigating to see the reconstruction pictures on the site Caryn mentioned and I was absolutely amazed at the beautiful reconstruction the women had. Please, visit the site. The pictures are password protected but well worth the few moments to contact Sue for the password.
I am more hopeful than I was before...especially since I had mastectomy, radiation and I was so disappointed to hear my options and see the work I had looked at by other surgeons. But....as I have seen for myself after reviewing the reconstructions done by gifted surgeons...God would have a hard time telling some of them from the pre-mastectomy breasts.
Whatever you decide...I will pray the answer comes easily.
Love and prayers,
Connie
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Posted By: trip2
Date Posted: Apr 24 2008 at 12:50pm
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Oh Joan2844 I am so very sorry to hear about your biopsy results.
I know this is a jolt to you and your family.
I hope things have calmed down a bit by now and I understand deciding on a double M is very hard, my heart goes out to you.
You are right, they did catch it early! ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: thinkpositive
Date Posted: Apr 24 2008 at 4:22pm
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Joan - I did a double mastectomy after being diagnosed with stage 2 invasive ductal in left breast with a 2.8 cm tumor. I have never regretted my decision. I have met or talked to at least 6 women who had recurrences in their other breast. At least I know that I do not have to deal with a second surgery and reconstruction. My focus can be on living not image or boobs.
I wish you well. Hugs and prayers. chris ------------- dx 3/06 stg II 0/7 lymph bilateral mastectomy 7/06 AC/Taxol lung mets 1/08 Avastin Abraxene 02/08/9/08 Brca neg Avastin Xeloda 10/08 Curagen 2/09 Ixempra 6/09 Lung Mets Gemzar/ Carboplatin 9/09 |
Posted By: tofu
Date Posted: Apr 27 2008 at 10:56pm
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Dear Joan and other friends, I will start my follow-up anti-cancer drug, Xeloda next month (2008/05/23), because my foot-numbness is getting better. My doctor wants to continue Xeloda a year long, but I am not sure to have it so long time without serious side-effect. But TNBC members adviced me many good methods for the side-effect hand-foot desease, thanks. I will report my preventing chemotherapy after starting it. See you again, and God bless you, Joan ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: Joan2844
Date Posted: Apr 28 2008 at 4:12am
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Dear Tofu, I am glad you have made a decision about the Xeloda -- decision making can be the hardest part sometimes! And I would advise you to see how things go, and decide during your treatment if a year is too long or is manageable. One thing I have learned with cancer treatment is that you have to roll with the punches and not get too far ahead of yourself on planning. See how the first round goes, and take things from there. No one wants to be on medication longer than necessary, but Xeloda was something very manageable for me. I would not have wanted to have been on it for as long as your doctor is suggesting, but I think it would have been okay for me. Speaking of me... I've decided to have a single mastectomy with a lattismus (back) flap for reconstruction. This will be on May 19. It will be a 4-5 hour surgery, and that is part of the reason I opted only for the single M. Plus, my surgeon said I have a "1% chance per year" of cancer forming in my "healthy" breast. For now, I'll keep my breast and take my chances. Thank you all for your support and prayers. I hope and pray that this is a residual cancer that is "left over" and that M. will completely take care of it. That is a possibility. But we will not know for sure until after the pathology is done after the M. Take care ladies, and enjoy your day! ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: trip2
Date Posted: Apr 28 2008 at 4:49am
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Joan2844 I hope your surgery goes well for you and everything is ok and that it is only residual c.
Think positive and let us know,
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Apr 28 2008 at 4:52am
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Tofu, that's good news that your foot-numbness is getting better.
Try your best to not look ahead too far as Joan2844 suggested, just see how things go and let us know how you are doing, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Joan2844
Date Posted: Apr 28 2008 at 5:29am
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Thanks, trip2. We've had a few conversations over the last year or so. We haven't met, but I consider you a friend. I'll be on-line after my surgery. Take care, Joan ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: cg---
Date Posted: Apr 28 2008 at 5:53am
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Dear Joan,
That will be one crowded operating room! I am reserving my seat in the prayer and best wishes for a speedy recovery gallery.
Hugs,
Connie
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Posted By: Joan2844
Date Posted: May 23 2008 at 3:39pm
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Ladies, I had my mastectomy and "back flap" on Monday, 5/22. I came home Wednesday, and today (Friday) am feeling much better. Also, feeling really BORED with sitting around, but I know it is best for my drainage. Thank you for all of your prayers and concerns. Pathology is due back next week sometime. Praying for DCIS and NO chemotherapy. Take care ladies... you're each so special! ------------- 9/06 Stage2B. Pos Nodes; Neg BRAC; TAC/Lumpectomy/Rads/Xeloda. 4/08 Local Recurrence; Mast w/ Latissimus Flap;Taxol/Gemzar/Carbo. Zometa. NED since May 2008 :-) www.wow-matt14.blogspot.com |
Posted By: trip2
Date Posted: May 24 2008 at 4:12am
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Hi Joan2844 and welcome back from your mastectomy.
That's wonderful you are feeling better and getting bored! Try reading a book, flippin thru a mag, calling friends, watching a movie. I know, it can be boring. You can always talk to us.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: tofu
Date Posted: May 24 2008 at 5:23am
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Dear Joan,
Your coming back from the operation is the best news for me. You are so strong that you stayed hospital only three? days for the operation. I cannot believe it. I stayed eight days for my mastectomy and DIEP Flap reconstruction. Have free and easy days with your family. The second good news is that I started my follow up chemotherapy, Xeloda from 23 May because my feet numbness became better. Now I have not any side effects. I requested my doctor to prescribe vitamin B6, ureal cream, and steroid ointment for me. I am thankful to Joan, Connie and TNBCF members for giving a lot of encouragement and information about Xeloda and TNBC. I read an article which Connie taught me, and it gave me right and good topics which really encouraged me. http://bcwatchdigest.evidencewatch.com/ I wll report my follow up chemotherapy continuously. God bless Joan and everyone. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: tofu
Date Posted: Aug 01 2008 at 4:23am
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Dear everyone,
I'm fifty and fine, and having Xeloda more than three months. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: Nancy
Date Posted: Aug 01 2008 at 7:19am
HAPPY BIRTHDAY TOFU!!!!!!!!
It did not come up on the site, so thanks for telling us. Birthdays are soooo special.
So glad to hear that your side effects are not too bad. This is wonderful that you have a blog, which I know will help 100's if not 1000's of other women.
Please post more often and let us know how you are doing.
Hugs,
Nancy
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Posted By: trip2
Date Posted: Aug 01 2008 at 7:21am
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Happy Birthday Tofu! I hope your day is a wonderful day and you do something special for yourself, you sure deserve it.
It is good to hear you are doing well and what a great idea to start a blog and reach out to other Janpanese TNBC patients.
We are all here for each other.
May your day be wonderful ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: cg---
Date Posted: Aug 01 2008 at 10:45am
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Dear Tofu,
Happy Birthday to another dear cyber sister,
and many, many more to come.
Love and best wishes for a wonderful day.
Connie
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Posted By: tofu
Date Posted: Sep 08 2008 at 4:01am
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Dear everyone, I finished 5th cycle of Xeloda. Thank you for your encouragements, and they make my mind stronger. My side-effects are not so bad, but a little heavier. A little pain of hands and dry skin of my feet with dermatosis (desquamation). I use vitamin B6 and ureal cream with steroid ointment for my feet. Sometimes I feel tired in sommer hot weather, but sleep off fatigue. I introduce this cite for Japanese TNBC patients almost every weekend. Cheking the forum for introducing, I learn many kowledge again about the therapy and how to treat my side-effects. Thank you so much. God bless everyone. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: trip2
Date Posted: Sep 09 2008 at 3:43pm
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Tofu,
When the weather is bothering you or you are feeling tired just be sure and get your rest and drink lots of water.
Let us know how things go for you, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: tofu
Date Posted: Oct 10 2008 at 7:24pm
Hi Every TNBC member ,I am doing 7th cycle of Xeloda. Thank you for your messages and e-mail, I got a lot of energy from them. My side-effects are almost same, but Xeloda cycle by cycle it becomes heavier, especially low diminished appetite and fatigue, but acceptable. A little pain of hands and dry skin of my feet can be accepted, using vitamin B6 and ureal cream with steroid ointment. Nancy kindly sent me the "chemo and radiation tips" file, and my friend (who is working for UN and JICA) and I translated it in Japanese and upload on my web, --> http://to4f.web.fc2.com/tnbc/chemoradtipjapanesetranslation3.html - here . Many patient friends are reading it and encouraged. Thank you so much for the TNBCF gals and Nancy. I drink a lot of water and organic tea everyday. This is my small chemo tip. The tea I often drink is a kind of green tea, so called "coarse tea (Ban-cha)" which is cheaper than green tea but has lower caffeine and higher cathechin. High grade green tea needs to use lower temperature hot water, but coarse tea needs boiled water like black tea and higher temperature hot water can make higher density cathechin which is good for preventing cancer. Last week I supported a meeting of BC patients and reconstruction surgeons, passing busy days for preparing lists, name cards, and plans for the communication between patients and doctors. More than 200 patients attended the meeting and had lectures, lunch and dinner meeting in Yokohama. There are few reconstructed BC patients in Japan because of many reasons. I heard only 5% mastectomy patients had done reconstruction. So my friend who reconstructed her breast four years ago with DIEP-flap method holds monthly meeting for reconstruction applicants with patients who have done reconstruction. I reconstructed my breast with the same method by the same surgeons in Feb. 2008 and now sometimes cooperate the meetings. Our reconstruction surgeons started their lecture for BC patients last year, and the annual lecture was also held last week. Now I finished all works after the meeting, and have a little rest. Enjoy your good season. God bless you, ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: cg---
Date Posted: Oct 10 2008 at 7:40pm
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Dear Tofu,
How wonderful to hear from you. I am so pleased that you are doing so well!
Thank you so much for the advice about the tea. I am going to be in Vancouver next month and I will have the opportunity to buy many things from Japan. The University of British Columbia has a very large Japanese student population and a Japanese student dormitory.
There is another woman from Japan on this site, Ponyo. I gave her your name. I hope you have made contact.
We all have to make sure we get the information out to make the best choices for our treatment.
Please stay in touch, we love to hear from you.
Connie
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Posted By: Nancy
Date Posted: Oct 10 2008 at 7:51pm
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Hi tofu,
I have just added your tip on the tea to the chemo and rad tips. Thank you so much and it is wonderful to know that the TNBC Foundation chemo and rad tips may be helping a sister in Japan!
Bless you dear tofu!
 Nancy
------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: tofu
Date Posted: Oct 11 2008 at 1:08am
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Hi Connie and Nancy, I have contacted with Ponyo, thank you. Unfortunately her home is 500ｋｍ far from mine. She sent me two e-mail. I don't know the trial of Avastin and her adjuvant history well. I can advise her only looking for a reliable oncologist and make discussion till she understand all probability and risk of Avastin for her case. Is Avanstin controversial in U.S. and some Europe countries also before reccurence, isn't it? Recently I translated a "three myth" part of the article (bcwatchdigest.evidencewatch.com) which you sent me and upload memo about it. ---> http://blog-imgs-19.fc2.com/t/o/4/to4f/20081004172407.html - here . If you think, it hurts the copyright of the article, I'll delete it. And I'm also reading many papers for making summary about the differences of "basal subtype" ,"Basal-like subtype", and "Triple negative". Nancy, thanks, for adding my tip to the chemo tips  . I was glad that I heard your daughter are also drinking green tea.Thanks, everyone, ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: tofu
Date Posted: Jan 17 2009 at 3:02am
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Hi every TNBC member, I wish all, your happy new year. I am doing 12th cycle of Xeloda. My Xeloda side-effects become a little heavier, but acceptable. I feel low level nausea and fatigue, also. There are a separation of the fifth toe nail plate from nail bed, a little pain and dry skin of my feet. I will have a health check, CT and mammography screening at the end of January, since I had a mastectomy and reconstruction a year ago. Really Time has wings. I wish my breast cancer also had flied. God bless you, ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: cg---
Date Posted: Jan 17 2009 at 5:51am
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Dear Tofu,
I was thinking about you...Happy Healthy New Year.
I am pleased the Xeloda is almost finished for your. I have my CAT scan on January 28 and had mammogram and ultrasound.
We will check in with each other when our results are back.
Continue to keep well....we will make it through this together.
Please continue to read all the recent updates and research that Nancy and Pam post for us in the one forum dedicated to studies and articles.
Be well and happy. It is wonderful to hear from you.
Love,
Connie
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Posted By: tofu
Date Posted: Jan 18 2009 at 3:55am
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Dear Connie, I finished almost two third of 16 cycle Xeloda. My doctor wants to continue Xeloda one year, till May/2009. The goal is coming soon with the spring season. >I have my CAT scan on January 28 and had mammogram and ultrasound. >We will check in with each other when our results are back. Coincidence! My scan will be done on January 29th in Japan (28th in Canada, maybe) When I have my checking. I will think of you and pray for you. >Please continue to read all the recent updates and research that Nancy and >Pam post for us in the one forum dedicated to studies and articles. I often check TNBCF cite and translate those interesting information in Japanese, and write down on my blog. Thank you very much for Connie, Nancy, Pam and others on the TNBC Forum. Hug with love from Far East ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: cg---
Date Posted: Jan 18 2009 at 4:38am
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Dear Tofu,
I wonder if you had a lower dose for your Xeloda? They have been doing studies to see if a lower dose is as effective and even different scheduling of one week on and one week off.
Apparently from what I understand, Xeloda can be effective at a lower dose. I mention this because if you decide to do a year of maintenance - maybe you could have a dose reduction and minimize the side effects.
I believe Johns Hopkins did studies on side effects and efficacy at a lower dose. I remember the studies were done last year. Possibly your oncologist has read something.
I must tell you that I would not mind being on maintenance therapy for a year. If you read the post of R. Henderson - she had 21 positive nodes and had weekly chemotherapy for one year and she is now posting on this forum 22 years later!
I think they mind find that longer, weekly may be just the way to treat our TNBC!
Much love and warm thoughts, (have to think warm thoughts because the winter is brutally cold this year in Canada!)
Good luck and I will think of you when I am having my CAT scan - positive energy and thoughts.
Connie
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Posted By: krisa
Date Posted: Jan 18 2009 at 6:39am
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connie, i agree about perhaps putting TNBCers on a maintenance dose of chemo for a year. |
Posted By: Suzanne
Date Posted: Jan 18 2009 at 6:04pm
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Tofu, I loved your expression "Time has wings" and agree it would be nice for breast cancer also to fly away. What a lovely thought!
My teenage daughter plans to travel with a group this summer to our town's sister city, Nirasaki. Are you near there?
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: tofu
Date Posted: Jan 19 2009 at 3:36am
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Thanks Connie, It is also cold in Japan, but in my home town, Yokohama almost every day it is dry and sunny. If I feel worse than now, I'll reduce the Xeloda amount. I tried at first a low dose four week cycle Xeloda which is called "A" method, and common in Japan, but after that I tried a three week cycle Xeloda which is is called "B" method , higher dose but shorter cycle. The three week cycle method was felt easier because one week off came earlier. To tell the truth my doctor at first recommended me to have lower dose "A" method. So it is easy to change my dose lower. I checked lower dose Xeloda methods. I couldn't find a study of one week on and one week off by Johns Hopkins, but found like below. (1)a trial of Johns Hopkins cite (3 week cycle) http://www.hopkinskimmelcancercenter.org/clinicaltrials/protocol2.cfm?pID=J0425 (2) T. Taguchi at ASCO Sep/2008 (4 week cycle) http://www.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=58&abstractID=40325 (3) E. Levy et al at ASCO 2008 (3 week cycle) http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=58&abstractID=40386 (4) Taraina et al at ASCO 2008 (2 week cycle with Xeloda and others) http://www.asco.org/ASCO/Abstracts+%26+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=30463 They described the optimal dosing schedule for C to be 7d followed by a 7d rest (7 - 7) Ref. (Norton et al, AACR 2005). http://theoncologist.alphamedpress.org/cgi/reprint/10/6/370 (5)Taraina et al http://www.ncbi.nlm.nih.gov/pubmed/18398145?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum Phase I study of a novel capecitabine schedule based on the Norton-Simon mathematical model in patients with metastatic breast cancer. (2 week cycle with Xeloda) I appreciate you cheer me up. Please, take care in colder winter. Suzanne, I'm glad to hear about your daughter. I live in Yokohama, Japan. Nirasaki city is more than 100km (60mile） from Yokohama. Maybe the distance is as same as Philadelphia and New York. I have not been to Nirasaki, but it is very famous for soccer football. I hope your daughter and friends have a good trip. See you soon, ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: tofu
Date Posted: Feb 19 2009 at 5:01am
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Hi every TNBC member, I finished 13th cycle of Xeloda. There are the Xeloda side-effects, but not severe. I feel low level fatigue, a little pain and dry skin of my feet. I will listen the result of the CT and mammography screening next week. Spring is come. But we have a chance of snow today. God bless you, ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: trip2
Date Posted: Feb 19 2009 at 6:14am
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Hi Tofu, it is so good to hear from you.
Sounds like the side affects have not been too bad. Are you taking anything for the pain and trying lotion for your feet or do those things help?
Good luck on your tests next week and prayers they are good results.
Let us know what you find out. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: tofu
Date Posted: Feb 21 2009 at 12:54am
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Hi Pam, Tnank you! I used three medecine for my side-effect. (1) Vitamin B6 20mg tablet, three times a day (2) Urea cream after bathing (3) Betamethasone valerate Gentamicin sulfate Now I need not (3) since I had not inflammation of feet recently, mostly use (1) and (2) only. I will inform my results from my checkup. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: tofu
Date Posted: Feb 24 2009 at 2:22am
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Hi Pam, and every TNBC member, Today I knew the result of the CT and mammography screening on 30 Jan. NED ( No evidence of disease ) I was relieved to hear that, and so I will continue more 3 cycle of Xeloda. It will finish it on 24th April in spring. Thank you for picking me up when I've been feeling down. I'll be seeing you.  ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: cg---
Date Posted: Feb 24 2009 at 2:32am
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Dear Tofu,
Congratulations!! What wonderful news. Very soon the chemotherapy will be finished and you can just enjoy life without any my side effects.
We were waiting to hear from you. Nancy and I were wondering how you made out because you and I had CAT scan and tests at the same time - I will find out March 2.
Isn't that the most beautiful phrase...No Evidence Disease?
Go and celebrate.
With much love and hugs coming your way.
Connie
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Posted By: tofu
Date Posted: Feb 24 2009 at 2:56am
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Dear Connie, Dear Nancy, I am near to tears seeing your message. "Nancy and I were wondering how you made out because you and I had CAT
scan and tests at the same time - I will find out March 2."Thank you, "Doumo Arigatou"  I pray your No Evidence of Disease! I also think "No Disease " is the best for ordinary people , but for us, there has never been a better word "No Evidence of Disease". God bless you, ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: Nancy
Date Posted: Feb 24 2009 at 8:01am
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My dear dear Tofu,
"Doumo Arigato" also. For all the information from you, which I know proves so helpful to our sisters here in the states, and other parts of the world, and for translating the chemo and radiation tips for all our sisters in Japan.
I too am so happy to hear that they see "No Evidence of Disease" for you and "No Disease" would indeed be "the" words that everyone in the world wants to hear.
I just keep thinking that if they would take all the money ever given for cancer research from all over the world....from the governments, and through donations...and as Connie has said many many times....give it all to the brightest and best scientists IN the world and set them free to find the CAUSE...and the CURE...we would not have this beast in our lives!!
I do not know if you read the post about our dear sister CalGal. She passed last week, and we will all miss her so very much. I have vowed to never forget her and to speak of her often, and to tell all the new members how kind she was to everyone on this site.
We will wait to hear from Connie on March 2, and I cannot understand why anyone has to wait more than a few days for any test results. That is so stressful.
love,
Nancy ------------- Nancy DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
Posted By: tofu
Date Posted: Apr 24 2009 at 6:27am
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Hi every TNBC member, I completed 16th cycle of Capecitabine(Xeloda) today. A little fatigue  , a little pain and a little dry skin of my hands and feet rest now. But they will be reliesed day by day.A half of my heart is joy for ｍｙ completed treatment , and the other half is anxiety for my no treatment from tomorrow. But I continue to enjoy an active life when I live. You helped me with your loves and hugs  . I feel blessed to have gotten to know you. Thank you, thank you, thank you. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: SagePatientAdvocates
Date Posted: Apr 24 2009 at 11:14am
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Dear Tofu,
I am very new here and I just caught up with your thread... First of all, I am delighted that you are NED.....My daughter is coming up on her 5 year marker and I will be very relieved to hear that again. Absolutely the sweetest acronym on the planet..You are in my prayers that NED is solely what you will hear for the future. What I found remarkable in all of this was the honesty, intelligence and courage you exhibited throughout and the support you received from so many on this marvelous site. It is really a very special authentic place and I am very honored to be a part of it. just wanted to belatedly say hi and let you know that I am in your corner, Steve ------------- I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates |
Posted By: tofu
Date Posted: Nov 02 2009 at 10:23pm
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Hi every TNBC member, A half year has passed since I completed 16 cycles (one year) of Capecitabine(Xeloda). When I had Xeloda, I maybe had a little chemo brain and felt hard to concentrate my research work.But I had my conference presentation last month, and had a good feeling about it. I recovered the all side-effects (fatigue, hand feet desease, skin problem) in this half year and went back to work fully in my field. I had a short operation of my reconstructed breast two weeks ago for ajusting the shape and excising the scar. Now I'm very fine. These years made me realize how much support I got from you. Thank you for all TNBC members' kindness. ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: Suzanne
Date Posted: Nov 02 2009 at 10:55pm
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Tofu, thanks for telling us how you are doing. It makes my heart sing every time I read that one of our TNBC members is doing fine. I hope for the day when triple negative breast cancer is no more dangerous than the common cold. Eventually, it will happen.
All the best to you,
Suzanne ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: trip2
Date Posted: Nov 08 2009 at 6:28pm
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Hi Tofu,
So nice to hear from you and that you are doing well. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: cg---
Date Posted: Nov 08 2009 at 7:59pm
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Tofu,
I was just thinking about you when someone gave me some Japanese green tea. I am thrilled you are doing so well.
Doesn't the sun seems brighter and the sky so much bluer once we have complete treatment and taken our lives back?
One of the many wonderful things about this forum is that no one is ever alone and help is just a message away.
Be well and happy dear Tofu.
Love and best wishes,
Connie
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Posted By: tofu
Date Posted: Feb 04 2010 at 11:12am
I finished the second annual check, and ....a small calcification was found at the other breast  , but the result is NED  . For celebrating the result, I'll have 19 day vacations in Boquete (Panama), Uyuni (Bolivia), and Atacama (Chille) via Dallas and Miami airport. This is the first overseas trip after my breast cancer treatments. It will start at the carnaval season, next week end. My most favorite thing is watching deserts, and dunes. Now I'm studying Spanish every day, and it is very difficult. Buenas Noches, mis TNBC amigas! Tofu in Yokohama ------------- Aug/07 age:48 IDC TNBC Neo-adjuvant EC+T Feb/08 Mastectomy & reconstruction with DIEP-flap. 4.7x2.7cm N0 g3 May/08-Apr/09 Xeloda to4f.blog110.fc2.com |
Posted By: Suzanne
Date Posted: Feb 04 2010 at 4:36pm
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Buena suerte y buen viaje, mi amiga.
Susana ------------- 1/2/07 IDC, stage 1 (T1c), 1.56cm, lumpectomy 1/8/07, triple neg., grade 3, sentinel lymph node biopsy negative, BRCA 1/2 negative; 4 AC/4 Taxol dose dense, 30 rads 2/07-7/07 |
Posted By: trip2
Date Posted: Feb 05 2010 at 6:13am
Wonderful Tofu! You deserve every bit of that trip, enjoy to your heart's fullest. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |