Calling all TNs
Comments
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Heidi, I think it's six of one, a half-dozen of another. With chemo first, you don't know the original status of your lymph nodes, but you do get a good idea of how your tumor is responding to the chemo, and can change regimens if the first isn't working.
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slcsat12: I was in the the trial you are talking about. Unfortunately I was allergic to Taxol so either had to get out of the study or stay in the study and get Avastin only. I originally opted to stay in the study but when I got home that night, the news came out about Avastin and stage IV patients. It scared me and I decided to go for regular chemo instead. I found out after I dropped the program that I was getting the Avastin (so I had 5 infustions). My thoughts about going in the study was that I would get regular chemo + an extra. Thought that could not hurt. Good luck to you and your decision.
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About the neoadjuvant and the adjuvant...maybe we should just rely on our oncs to know what is best..that is what they went to school for and what we pay the big bucks for...there are probably good things and bad things about each...if you have it b-4 chemo..you know that it is working..or not because that dang hateful tumor is dying...that is a great thing! If you have it after surgery, you know that 1) the tumor is already out of you and 2)..the chemo is going after any cells that maybe left in your body.
All in all..we know that chemo is all we Tn's have...so hopefully it kills the dang cancer either way....I don't know..maybe I would have liked to feel that tumor turn into a squishy pulp...and then had it removed..it probably would have felt good....but I had it removed pre-chemo..and that felt pretty good too...
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Sicst12, I was in the Avastin trial (5103) and received the DD AC and 12 weeks of T, and found out I was also getting the Avastin. Maybe that is more than is necessary for you, but I don't think my experience in it was worse than anyone else's on chemo. There is a thread on the discussion board for the 5103 trial and you can read what others have posted. I don't know that there is any evidence that the Avastin helps in early stage, but the full reports are not in yet so we really don't know.0
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Sounds like we have had some good news on here a lately with most of you doing well...in your different stages of treatment..we need some good news here.
Janda...oh yeah..it is freaky to end treatment...during chemo your goal is to be done and then once you are..it's like..ok..what do I do now? It's a big adjustment to go back to "normal"...it takes time but you will get there...believe me..the onc's aren't going to let you go for a long time...
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Neoadjuvant was never mentioned or offered to me. In fact, I don't think I even knew it was an option. My BS at MSK just scheduled the surgery; I didn't meet with a med onc until after surgery and, as it turned out, his preference is to get tumors out first.
Either way, I know I struggled with this for awhile afterwards. Since I had never had neo mentioned to me as an option, I wondered if it might have been a better choice. Eventually, I learned to "let sleeping dogs lie", since I couldn't change the outcome anyway.
Basically, my dx and subsequent surgery came so quickly that it was ahead of my learning curve. I found comfort in the fact that I had been treated at one of the best cancer centers in the country and that is how I got my head around it.
I will say that both my surgeon and my med onc seemed to indicate neo was more typically used in larger tumors when the goal is breast conservation. That made sense to me at the time but, as I mentioned above, I have learned a lot since then and the ability to asses a pCR is a compelling reason to have chemo neoadjuvantly.
Me, I just wanted that sucker OUT--- and was lucky enough to have clear margins, neg nodes, and no LVI. So glad to be past all that now.
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Hi Sharonkw
I had shortness of breath after my taxol treatments for quite sometime, but it has eventually lessened and now I have developed an unforgiving cough. The cough is pretty bad, that they had to do a chest xray today which came out clean and negative for pnemonia, which is what they suspected. I tried Clariton for shortness of breath, but it had not helped. I had even tried Benadryl thinking that I am allergic to one of the medications of infusion, it may not be taxol alone, but nothing had helped. I massaged my chest which was the only thing which helped me breathe better. I would massage for at least an hour, my ribs under the breast, the chest every night and that's how I would get to sleep. So, try to massage and see if that helps as I feel that massage helps with circulation and the blood in that area becomes a little cleaner with better circulation. Slowly it became better and thank God, now my taxol treatments are over. I think our respiratory system becomes really sensitive with the drugs. Do try to massage.
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Janda - look at my signature - not so different from your dx. I finished treatment on December 30 or 31 2009, so am a year out now. Yes it is hard to suddenly have nothing. I was shocked when my onc said see you in three months!!! Just keep posting to get support from a wonderful group of ladies.
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HeidiToo: The way it was explained to me, they usually only do adjuvent chemo when it is necessary to save the breast, like in my case. Mine was in a very tricky, hard to get to location and the chemo made it easier to do the MX without risk of doing more damage.
Riley: My BS checked my lymph nodes with a manual check, ultrasound, MRI, CT Scan--you name it they checked it and they looked clear prior to chemo so when the did my MX they opted to only take out the 2 sentinal nodes, they were clear and they went no further. Occasionally I worry that maybe they missed something but I think we all worry about that no matter what plan our dr's chose.
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went for my 3rd taxol/avastin treatment yesterday...everything went smooth..not reactions ...yah! Wondering when hairs going to fall out...waiting, and anticipating...sort of want to get it over with. Found wig, but it is a totally different color than my hair...Has anyone gone different..Im usually a sandy blond, and i went dark red! it puts color in my face unlike the blond ones...lol who knew?
Had wonderful nurses and spent the day with my mom...Is it normal to take 7-8 hours to do an infusion...I met an amazing lady whose been doing different rounds of chemo since 2003...Has anyone every participated in a Susan G Koman marathon? she was telling me about it and it sound interesting...
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Blindsided - Congratulations on your last TX. Hang in the bad week will hopefully go by fast. Only better days to come
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Gillyone:
What chemo were you on? Did you have chemo before sugery?
It looks like some of you been having av lot moore chemo than we have in Europa. I have been reading about some of you in here having a lot of chemo. Just wondering what the standard treatments for TN with positive nodes are for you in the states? Lookes like you don`t use Fec? And why are some of you on Xeloda or Avastin, if it has not spread? And another question: How long will thoose bone pain after taxotere be. Finished my last taxotere in november.. Feels like i having pain all over:-)
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Janda: I had 6 rounds of TAC(taxotere/adriamycin/cytoxan) I had horrible bone/joint pain for several months after my last tx. My feet were the worst but it was everywhere. It just seemed to gradually go away. after about 4 or 5 months Give it some time.
Navy
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HeidiToo: The way it was explained to me, they usually only do adjuvent chemo when it is necessary to save the breast, like in my case
MBJ- don't you mean *neoadjuvant* chemo? Neoadjuvant would (hopefully) shrink a larger tumor and make a successful lumpectomy more possible. That's how it was explained to me.
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Janda, my Avastin and Xeloda were given as part of a clinical trial to see if giving them to women with no detectable spread as part of their first-line treatment would slow or decrease the number of women who have recurrences popping up later.
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Swanny & Jen C: Thank you, I am still feeling good on day two and will be going to see Jersey Boys tonight to celebrate the end of the poisoning!
Hieditoo: Yes, that cancer blood test certainly does sound exciting! My cancer center is one of the participating sites. I asked my oncologist about it yesterday, but she said that they will only be doing the trials on people with more advanced diseases. Figures. by the time this goes public most of us will either have reached 5 yrs with NED or had the dreaded recurrance...
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Janda - I had 4 rounds dose dense of AC and then 4 rounds of Taxol.
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HeidiToo: Lol! Chemo stole my brain and I am not sure when she will return!
Moe: I have a red, black, blond and one to look just like my real hair. Go for it!
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Janda - I had surgery first - a lumpectomy. Chemo was DD 4x AC followed by DD 4x Taxol.Then rads. Diagnosis to the end of treatment was about 6 months. I think what I got was pretty standard for TNs. I also had the neulasta shot the day after each chemo.0
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Blindsided: congratulations on being done!!!!
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slc: re wig question: I went to a wig store, tried on several, and had a friend take photos. I went home and looked at them before deciding which one I wanted. The place I went had a "we won't be undersold" policy, so I looked the wig up online and bought it in store for the same rate. I didn't wear it long, tho, as I found it hot.
moe: That's funny about the wig color. I realized when I tried wigs on that I had been coloring my hair too blonde and looked too washed out.
It's been one year since my surgery. I see the onc this Thurs for a check-up and need to schedule a mammo for this month. Aside from aches, all is well. Best wishes to all who are going thru tx. I appreciate all the support over the past year.
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Moe - I was in the Avastin trial as well, but was receiving Placebo. My appt was at 8am, which was for blood work, then when the blood work came in I saw the onc, once he cleared me I had chemo - I usually got home around 2p. The premeds took about 45 min, the Taxol about 45 min - 1 hour and the same for the Avastin. They slowed my infusions because I didn't seem to do well at a shorter time. Towards the end my port started having blood clots which had to be thinned, causing another delay of an hour or so.......
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MBJ - my surgeon just took out the one sentinal node which was negative. No one checked me physically or did a CT scan or ultrasound, but I did have a petscan after the surgery was over. There was some activity (left breast postsurgical change) on the left side node area, but the radiologist said he preferred to think it was reactive to the surgery rather than metastatic. Since I don't trust my surgeon, I am very worried all the time, that they must have missed something and why just the one sentinal node was taken out. Did she check the second node or not? I think we TN's should get PetScans once a year. I feel that the PetScans are very good at detecting cancer anywhere in your body. They give you a sugar drink which shows an uptake wherever there is cancer cells present. I plan to ask my Onc. for a PetScan every year at least for the first3 - 5 years. I hope my insurance approves it.
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Lovelyface: I am so sorry that you didn't trust your surgeon as I think that is so important for our peace of mind in all of this!!! Did they at least do an MRI before surgery? Also, the test run after your surgery would have shown something if there was anything there. I had only two taken out and they only did this a a precaution because they didn't thin it was necessary. I have to say, my third opinion and my final choice of doctors was so thorough compared to the other doctors I went to. I wish this was the case for all of us. I hope for your peace of mind your insurance covers the test, too. Hugs.
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MBJ, Yes, I did have an MRI but the timing of everything was really weird. The results of the MRI came out the afternoon before the surgery which was at 6 a.m. the next day. Not sure if the surgeon even looked at the MRI. I was naive at this time and didn't know what this was all about, just wanted the surgeon to take the cancer out. In any case, I do trust my pathology report and see that large chunks of fibrous tissue was taken out, twice, and he gave me clear margins of 3 cms., so I get some peace of mind there. I just am not sure about my sentinal node area. Scary!!!! I am waiting to start rads by the end of the month and I am just thrilled to have this Rad. Onc., she is so thorough and great. She knew everything about me when I saw her. She had highlighted everything and is an amazing doc. Why couldn't they all be like her? I can totally trust myself with her, let her do anything she wants. She will give me 23 Rads. I have heard others talking about getting as many as 33 or more, so I feel a little lucky to be given only 23, which is 4 working weeks, plus 3 days. Thanks.
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Lovelyface: It sounds like your BS did a thorough job--they stage the surgery with those MRI's--- and I am glad that you trust your radiologist! Good luck with your sessions and I am sure it will be over faster then you can imagine. Hugs.
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Posting my feelings: For some reason I feel normal today like I felt before I had kids that good feeling, and I am so thankful for this day. Something keeps telling me I am going to be fine and that I will get through this.
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Fighter- Progress... see, you are getting there! Yeah!
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MBJ: Thank you! Still feeling pretty good on day 3 post final chemo & neulasta shot. I am beginning to fantasize about having hair, even though I know it won't be for awhile and that I will look horrible as a "curly top", but any bad hair day has to be better than a no hair day!0
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LovelyFace -
Re yearly PET scans for "all TNs." You also must realize that they can light up like Christmas trees by many things other than "cancer;" thereby forcing many women to have false positives, and/or needless tests, biopsies, etc. So a yearly PET is not the answer, unless there is a reason or symptom to have it in the first place.
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