August 2010...anyone starting chemo besides me?!
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How's the sores wher? Are you finding something to control them?
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Wherria: yes, it is frustrating but alas I am so ambivalent! Sort of push-me-here-I-come about it all but then I am desperate to get it started...it is all so odd!!!!
Question on post-menopausal pregnancy: if post-menopausal women can't have children how did Joan Lunden have kids at 54 and how did the other woman recently, in her late 60's I believe, have kids? I am just wondering if anyone knows the answer to this. I know I act like I am 10 (!!!) but I am actually 40 and I know all of this is going to push me into menopause and although I don't have children, I never really planned to but I don't think, based on the older women that have kids, that it necessarily takes the potential to have a child off the menu? Wherria also my onc at Yale told me, because of our age, we might go into menopause and then come out again when it is all over. Perhaps?!
Ann: welcome and sorry you have to join us but we are a good group so, at the very least, you meet the criteria to hang out with such a lovely group so happy to have you
Lisa: You are correct...I should have super-soaked the old lady AND stepped over her! Geez...what was I thinking?! Well, never again...that is all I can say (jk!)!!!!!!
What I really wonder is if any of our chemo girls today took my advice and brought the super soaker! I really doubt it!! It was such a good idea too....I am just saying....!
May you all have a nice weekend free of monopolized thinking about all of this stuff. BTW, and just so you all know, when you finish the first 2 beers in the 2 Can Sam hat, you should immediately put another 2 in!!!!! This is the basis for a truly care-free weekend!
Wher-one more thing: is the biotene helping you with the sores? That story about what happened to you on the stairs was a wee bit scary...I am sorry that happened. I hope you are doing a little better each day.
Happy trails-
Your FEARLESS Leader!
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I think I had my first hot-flash yesterday. I was at rehearsal, wearing a t-shirt, sweater and a hat (because it was about 48 degrees in San Francisco last night). And about an hour into rehearsal, I felt REALLY hot - like my head was sweating in my hat. I took it off and my sweater and just really felt like I was sweating all over. I asked if other people thought it was hot and they said "not really". I felt back to normal after an hour or so.
Ironically, I also got my period 2 days ago. WTF?
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lisasinglm-sounds like a hot flash...fun huh? I have been getting them for a few months due to my age and they come around my cycle. The worst one was when I woke up out of a dead sleep and actually thought I was on fire. I almost woke my husband up. It felt like I was burning from the inside out! They suck!
Hope everyone that started this week and today is doing well!
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My gynecologist was very sympathetic to the trials of chemopause and said I should call her for a 'clonidine patch' if I need one for the hot flashes.
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Hi gang, well I went in for my first TCH and it turns out I was the one to get a bad reaction during infusion. The nurse started with my usual herceptin (I have been taking herceptin only for a month already) and while it was going went over the potential side effects of my chemotherapy drugs. Then she gave me my pre meds, which were a steroid, an anti nausea med, and pepcid. My chemotherapy drugs are taxotere and carboplatin and we started with the taxotere. After about ten or fifteen minutes I all of a sudden felt pressure on my chest and was having trouble breathing. I got up to go get the nurse and started feeling even worse. The three nurses working rushed me back to my chair and immediately started tending to me. Apparently my face turned bright red, I was hot and nauseated and still was feeling the pressure on my chest and couldn't breathe very well. They stopped the taxotere, gave me oxygen, and started taking my blood pressure, pulse ox and pulse rate. Within minutes I was starting to feel better. My doctor was out of the office so another one in the practice came in to check on me. Ultimately she decided that she did not want to restart the taxotere, even at a slower drip rate because my reaction was so severe. She also said that the taxotere and carboplatin work well in tandem so since I was not getting the taxotere today I would not get the carboplatin either. They gave me more steroids and some benadryl to help get my body back to normal and let me go home about an hour later.
They said my doctor will be back in the office on Monday and the doctors and nurses will explain to him what happened. They made an appointment for me to see him on Tuesday to discuss what to do next. It sounds like they ar not going to be wiling to try the taxotere again and will suggest a different regimen. At this point I am disappointed and frustrated. I have read a lot about this regimen and it seems to be the most commonly used for people with similar cancer characteristics to mine. It is reportedly one of the better ones in terms of side effects so now I am afraid I will end up with a rougher regimen and one that is not as well suited to my situation.
They told me that all the steroids I got will probably make me feel hyper and have trouble sleeping tonight but right now I am just feeling physically and emotionally exhausted. I slept for a while after getting home and I still just feel very low energy. So now I have a few more days of waiting and then we will figure out what to do next.
So I had a crap day and now I'm feeling really down that I didn't get to start my chemo and now I'm back in the TBA limbo of when will I start and what will I be getting. I hope the other women who started today had more success than I did! Is anyone else in this group HER2+ and getting something other than taxotere and carboplatin with their herceptin? I don't even know what my other options are because all both the oncs I saw suggested was the TCH.0 -
Hi jsw - I'm so sorry you had the bad reaction to the taxotere! It sounds scary!
My onc had given me a choice of AC/TH or the TCH. I have a long history of heart disease in my family and I have type I Diabetes, which increases my risk of heart disease, so I opted for the TCH.
I think the "T" in the AC/TH was Taxol, not Taxotere.
Good luck! Maybe you can get an easier regimen?
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I am also so sorry you had a reaction!!!
I was offered the same, the TCH from my current doctor and the AC/TH from my second opinion doctor.
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JSW: that is a frightening reaction...so sorry you had to go through it. I was losing my breath reading what happened to you.
Lisa: I, too, was worried about heart issues with these cocktails of drugs. I don't have family history but was worried nonetheless. I guess all we can do is be happy there is an end to this chemo business!
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I believe someone was wondering recently on this board where the term "bite the bullet" came from. When I looked it up, I could not help but post the origin of the phrase and it also highlights how far medicine has come!
Before the advent of ether, the first anesthetic, surgery was a pretty desperate and painful affair. With the patient (although victim might be more descriptive) fully conscious and feeling the pain. These early surgeries were typically limb amputations or the removal of some object lodged into the body such as a bullet or arrowhead. A typical amputation consisted of the "surgeon" using a saw to hack off the unwanted limb. The skin was then pulled down over the stub and sutured shut. Amazingly, some of these patients survived, but certainly the success ratio was low. Note that poorly skilled physicians today are called "hacks".
Even after the advent of anesthetics such emergency surgery has had to be performed at times. Particularly in times of war when anesthetics may be in limited supply or unavailable.
To ease the pain the patient was given a couple of stiff belts of whiskey to numb the senses, then given a stick or lead bullet to bite down on as the surgeon went to work with knife and saw.
The bullet or stick was given to let the patient focus their energy and attention on the biting instead of the cutting and pain. It may also have helped to reduce the screaming, which probably benefited the surgeon and attendants.
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My, my...we have come a long way!!!!!!
Your FEARLESS Leader!0 -
Hi all--just reporting in after my 1st FEC treatment. The actual treatment went well--no issues with the treatment. I did have issue with my veins (no surprise) but the nurses were good and they called in the "expert" and she got it in on first try. Fast forward to home..feeling OK, THEN.....NAUSEA, PUKING etc. I have not been able to keep down any food at all--and I mean anything (my hubbie gave me 1 cracker) and it quickly reappeared. I have determined that people can go days with no food so not so worried--more worried about getting dehydtrated. I have anti-nausea that are obviously not the best for me. I will call Oncologist in the AM and see what can be done --- probably nothing until Monday. I don't want to scare the others on this treatment---everyone is different. Hope that everyone else is much luckier.
I'll keep you posted.
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jsw: I did TCH from Jan-May and had the same reaction you did from the Taxotere except that mine happened almost immediately(like after 3 drips in) so they stopped the Taxotere. I did get the Carboplatin that day and the onc wanted me to come back the following week & try the Taxotere again. The next time they gave me my pre-meds before giving me the Herceptin(and I think they may have given me more Benedryl as well) and then they ran the Taxotere at a very slow rate and the nurse sat with me for the first 30 minutes to see if I had a reaction. i was fine and never had another reaction to it. They were able to give it to me at the regular pacethe following treatment too. So just something to mention to your onc when you see him.I had discussed AC followed by the Taxol & he said that since Taxol &Taxotere are in the same "family" my reaction would most likely be the same so he wanted to try the TCH again before changing my whole regimin and I am glad that he did.
All very scary & frustrating so I hope you are feeling better tonight and good luck at your next appointment.
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Thanks ladies for the support. Rachel, I'm sorry you had a bad experience today too. I guess Friday the 13th turned out to not be such a good day for treatment! Sometimes different medicines work better for people than others so maybe they can call in a different anti-nausea med to a pharmacy for you. Just try to take small sips of something like gatorade or flat ginger ale every few minutes to help ward off the dehydration.
I am worried about doing an AC/TH regimen because of the heart considerations. The "T" in that one is generally Taxol, which might work for me, but I worry about the heart problems that come with the "A". I don't have any history of heart problems but I am only 32 and hope to live many more years after this and I don't want to end up with heart problems as a result of this treatment. Right now I am hoping that they can either just sub out Taxol for the Taxotere in the TCH but I can't seem to find much information on that online so I don't know if it is something that is commonly done or not. Hopefully I would not react to the Taxol. I also wonder if they might consider trying the Taxotere again but with additional meds. I know some people take a steroid starting the day before, which they did not do for me and they also did not give me any Benadryl in my pre meds. Maybe a possibility would be getting a steroid in advance and adding Benadryl to the pre meds and doing a super slow drip. The nurse who was doing my infusion did say that she had just sped up the drip right before I had my reaction. I would happily sit there all day for a slow drip if it would allow me to get through this regimen successfully.
Thanks again for the kind words. I have also shared this experience with my family and friends (I do a CaringBridge blog) but I feel like you ladies are "in the trenches" with me so to speak and offer a very special and needed kind of support. It is funny, my mom also asked me if it was scary when I talked to her about my reaction and I realized that I was not scared at all. It happened so suddenly that I went from thinking "that's funny, my chest feels weird" to having the nurses all over me and then thinking "oh crap, I hope I don't throw up" and then the symptoms started to fade away pretty quickly.
So the moral of the story is, if you get a bad reaction, alert the nurses right away because they know exactly what to do and also if at all possible don't get up, let someone else alert them. I really think that standing up made my reaction even worse. Once I was feeling better one of the other patients said to me "You should have stayed there and let me get the nurses!" The treatment room at my onc's office is kind of small and crowded so I had just asked my husband to drop me off and then pick me up when it was over since I wasn't expecting to have any trouble but I didn't want to be driving just in case. Anyway, I'm anxious to get back to my onc on Tuesday and figure out the new plan. I really want to get this chemo going!
PS youngmomof3 I just saw your post, it must have come up while I was writing mine. Thanks for the suggestion and I am sorry that you had a reaction too but it is comforting to hear that you were able to try it again with extra meds and it worked. Like you said they gave me the herceptin first then pre meds then immediately into the taxotere so maybe that is a good trick, to get the pre meds before the herceptin and give them a little time to kick in. I will definitely bring that up with my onc when I see him on Tuesday!
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I got my pre-meds (including Benadryl & steroid) before the Herceptin, too - then Taxotere, then Carboplatin. Don't know if that made the difference for me, but I assume it is an accepted practice.
Good luck!
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My name is Coleen, I live in Iowa and am 57 . I was told I was cancer free from Drs and tests taken in my hometown, but was suspicious and went for a second opinion at another breast cancer center in Illinois, where I had a biopsy, partial mastectomy to remove a 1.5cm phyllodes cancerous tumor inside a 1.5cm benign tumor and removal of 28 nodes of which 24 were cancerous. I got infection after surgery, but had my port put in and started chemo on August 2nd. My chemo regimen is to be dose dense every 2 weeks with 4 treatments of Adriamycin & Cytoxan and then 4 treatments of Taxol. I received the day after Neulasta shot. The nausea meds helped a lot but have a lot of fatigue and just uncomfortable side effects, but nothing serious so far. My second treatment is Monday, August 16th. I am glad I found this site and women to connect with. I am fairly healthy otherwise and am use to golfing regularly and am concerned about chemo side effects such as peripheral neuropathy, heart damage and blood clots. I do have a history of blood clots and don't like the distance that I have to travel for treatments so am thinking about transferring to a closer cancer center, but I do like my Oncologist and don't know what changes may take place in my treatment plan if I switch.Anyway, that is the just of my story and I need prayers as I travel thru this journey and I will be praying for all of you as well, I will be glad to hear from any of you !
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Welcome Coleen - I'm glad you had the diligence to find a doctor who would listen to your concerns! I don't understand how some of these physicians dismiss patients who may have BC. I had two mammograms and the radiologist met with me. He told me the "lump' under my arm was "nothing" --just a "cyst" and he wouldn't bother biopsying it - and that I had some spots in my breast which most likely were nothing but to go have a breast MRI just to be sure. Or just wait three or four months and come back.
I didn't do either - I got myself to a breast surgeon who did a biopsy right there in the office of the node and the breast, that same day. Both had cancer.
I'm also having AC and am concerned about all the toxicity, as well as nerve damage. I am a doll artist and I need my fingers for detailed painting! =:O But there are many things they can give you naturally or that you can take to help with that. Coenzyme Q10 is very promising for protecting the heart cells during chemo, and the B vitamins also are helping in forming a sheath around the nerve cells to help protect them. The medical community is starting to pay attention to Q10 -I wish they would precribe it on the outset.
I love to run, so I'm concerned about the heart toxicity too. But I figure if I do NOT have the chemo, then the heart issue won't be a problem because I won't be around to worry about it. So we go through it.....
hang in there!
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Hello everyone. I hope you are all in for a nice weekend.
LadyiBama: You asked about the regimen I'm on. I'm on Cytoxan and Taxotere. The other option that I was given was AC→T (Adriamycin/Cytoxan followed by Taxol or Taxotere). This one was ruled out in my case because I have a history of cardiac problems (mild though they were). If you're interested in learning about other Tx regimens, I would again recommend going to nccn.org to look at the Clinical Oncology Practice Guidelines.
Calamtykel and Lizzy: Thanks for asking about the sores. Yes, they are getting better. I have used all the rinses: the baking soda/saltwater rinse which I use very regularly (though that is more for overall oral hygiene than it is mouth sores, biotene which helps some, but doesn't have any analgesic, the Miracle Mouthwash which requires a prescription, and the GelClair which also requires Rx. Each of these has helped a little, but they are not very long-lasting at all. When it was at its worst and I felt like I had razor blades in my mouth and couldn't even talk, I tried regular old orajel and anbesol, and to my surprise they helped more than all the rest. Took the pain away more completely. Anbesol hurts going on, but then you are numb enough to swallow and drink.
Lizzy: As for being thrown into menopause, I am already post-menopausal, so I will not be coming out of it after Tx, but from what I've read many women who are pre-menopausal before Tx do get their periods/fertility back afterwards. However, the closer you are to being menopausal/peri-menopausal, the less likely you will come out of it post-Tx. I am hoping for the best for all you ladies who are struggling and wondering about this issue. I had to come to terms with my own infertility when I was 33, and I don't think that grief/sadness/loss will ever go away for me. I never wanted anything more than to be a mother (and I am not a candidate for adoption because of a psychiatric history). So I am keeping not only your health and wellbeing in my prayers for you ladies, but your fertility as well.
For those going through hot flashes, I can offer a few suggestions. First, I would recommend asking your docs about taking a small dose of either Effexor or Paxil. Both are anti-depressants (which many people find helpful as they go through CA Tx anyway), but beyond that, they have both been found to ease hot flashes. Some other anti-depressants in the SSRI class may also be options -- these just happen to be the two that are generally the most helpful with hot flashes. Also, watch what you eat before going to bed if you're having night sweats. I found, and I've read of it also, that eating spicy foods or sweet foods or drinking alcohol in the evening can lead to more night sweats. Nothing is more frustrating than having to wake up and change your clothes three times a night, or in the winter go stand outside three or four times a night, just to get some sleep!
Jsw: I will echo everyone else's sympathy for how your Tx went (or didn't!). I do hope that your doc can find a way to keep you on track and on schedule with your chemo regimen.
Rachel: PLEASE, PLEASE, PLEASE do not be afraid to page whichever oncologist is on call over the weekend regarding your nausea. It is what s/he is there for. It is NOT a small matter. It is a VERY legitimate reason to page the onc. All s/he would have to do is phone in another script for you, and your docs don't want you throwing up and becoming dehydrated and weak any more than you do. Please get the help you need now, and don't wait until Monday. There is no reason to wait. There is someone available to help you, and that is his/her job!
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Hi Wherria--Thanks for the idea. I will call them today. I am actually feeling better today but will still call and see what can be done. Thanks, Rachel
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'Thanks calamtykel for the response. I started taking CQ10 & Selenium right after my diagnosis,but now my Onco wants me off all supplememts during chemo.What are the opinions or reports on this? It is interesting that you are a doll artist. My husband is a professional artist and art educator. He does mainly large scale paintings and drawings in all mediums.
Lizzymack1. Can you add me to the August list. I started chemo on August 2nd. This site is going to be a great help to me. I was feeling so alone even though I have a supportive family. Praying for all of you!
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'Thanks calamtykel for the response. I started taking CQ10 & Selenium right after my diagnosis,but now my Onco wants me off all supplememts during chemo.What are the opinions or reports on this? It is interesting that you are a doll artist. My husband is a professional artist and art educator. He does mainly large scale paintings and drawings in all mediums.
Lizzymack1. Can you add me to the August list. I started chemo on August 2nd. This site is going to be a great help to me. I was feeling so alone even though I have a supportive family. Praying for all of you!
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Not to gross anyone out, but dealing with constipation (any tips) I'm taking miralax per ocon and had first TCH on Thursday. Just a little indigestion and the C. I just hope the herceptin is attacking those little suckers and telling them to die and not divide. I think I felt a lot of fatigue the day after, but it was managable. Not nearly as bad as I was anticipating. Beth
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Colleen: Sorry you had to join us but it seems you officially meet the criteria to be here so WELCOME! I update the list midweek and on Sunday so I will certainly add you.
Libraylil: Dulcolax and if you mix metamucil(orange flavored powder) with 1 part cranberry, 2 parts water your will completely eradicate any issues you might be having with that!
Wherria: thanks for the well-wishes and the info on fertility. I am, however, sorry your fertility was compromised. That is hard to deal with and I am so sorry that happened to you. I still don't understand how Joan Lunden had kids at 54 (and a host of other "older" women?) but I am sure we won't really know the medical details of that situation! Glad your sores are tempered, at least a bit, by the mouthwashes. I know this chemo business takes our systems all the way down in an effort to rid us of junk our body does not need but what a process this is for you (and all the others who have started) and for me soon to join you all! I am so glad we are all here and discussing this matter. It really helps.
I hope everyone is going to have a nice weekend as it is beautiful here in CT today. I have been painting nearly everything and today is no different! It is cathartic and keeps my mind busy! I have started working with some photos of graffiti ridden subway trains from NY and other associated "gritty city" pics I have an amalgamation of it seems and developing a type of industrial art using scrap metal, bolts and plywood....I am having some fun with this! Alas I am off to make an egg white omelette with the full rainbow of peppers and some mushrooms for good measure! Oh...I also have feta! What a work of art I shall create this morning!
Good day all and thanks so much for sharing and supporting each other. This has been so much more than I could have hoped for when I started it so I have you all to thank for that.Liz
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Libraylil - I often have an issue with constipation and when i told the onc that, he recommended Senna. So for my first treatment, I took the Senna every night as long as I was on the anti-nausea drugs. It worked like a charm. Good luck!
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Good morning Liz,
You have basically the same diagnosis. So, what chemo will you be starting soon? Were you given choices? Once my foob burn heals (it's been 3 weeks today and still not there) I am suppesed to do TAC and am thinking about requesting TC. Note to other bmx-ers... if a big ole pot shifts on the stove check your numb foobs! Have a great weekend all and stay cool.
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57Collen:
I read that just go off supplements for the day before the day of and the day after chemo. That's what I'm doing. There is so much conflicting information out there this just seems reasonable for me.
Michelle
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Coleen: My onc said he's giving me Taxotere instead of Taxol because it has fewer long-term side effect like neuropathy. So you may want to ask your doc about this possibility. I'm getting a little wary of the taxotere though since I've been reading the forum about permanent hair loss. Have others heard of this? I'm trying to convince myself that it's a very rare SE and there are so many different SEs that we just have to take our chances with what our docs recommend.
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libraylil: I took a stool softener/stimulant laxitive the night before chemo and then I have been drinking lots of fluids and eating dried figs, prunes, etc. I was so constipated my first treatment and this second one which was on Thursday August 12 I've been great so far. I take my last two nausea pills today (Zofran) and took my last round of steroids (2 in the morning and 2 at night yesterday), I will still keep eating lots of fiber and drinking lots of fluids.
Michelle
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Hello Everyone,
I am not on the list but I started AC Chemo Aug12th. I am taking 8 cycle treatments pre-surgery.
So far I have avoided the dreaded nausea....just tired like the rest of us. I take emend and dexamethasone for the nausea. I took Neulasta yesterday and I am starting to feel the effect of it. I am shaking like a leaf. If anyone else is having SE's from Neulasta please let me know.
I made an appointment to cut my hair but cancelled it hoping that I will not be affected too badly.
Sharon
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Adey:
Good morning! I have a question: when counting nodes is the sentinel plus 1 considered 2 nodes or is it 1 + the sentinel? Just wondering about that this morning. In any case, I met with 1 onc on July 15th and his staff NEVER set up any of the pre-op scans, no one returned calls and I was basically left hanging, expecting something would happen and, sure enough, nothing ever would. By the time I figured out I was dealing with such an inept dr's office, I had to call my bs to get a new onc and that took 10 days to get that appointment. I was healing from the infection/look of a "burned" boob (I cannot believe the way that happened to you!) but all the scans and blood work could have been done. The last conversation I had with the inept onc's office was "let us know when the infection clears and we will "squeeze" you in for chemo!" I felt really loved! In addition, after hanging up, I realized they never even set up the appt to put the port in!!!!!!
So off to the new onc I finally went this past week. Why is it that I can see his face perfectly, I can see his eyes, his hair but I can't remember for the life of me what he said!!!! In addition he gave me a handout explaining everything and I can't find it OR my notes! I am only pretty sure, pending the mugga scan results, I will be on T*A*C for 6 treatments. I don't like the "A" but I also have no history of heart problems and, if the mugga scan is clean, he feels that is best. I just wish I could find the handout and my notes. I think this entire situation is so surreal I just draw blanks when I am with these docs. I really wish we could record our conversations with them so we could reference them later but surely, in our litigous society, that will never be an option!
What are you having? Are you happy with your onc? Please tell me you suffer from post-doc meeting memory loss as I do!?!!!!!
Have a great weekend-
Liz
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Lizzy: I take my DH to each appointment so two of us are hearing what the docs say. Take DH or a friend or someone with you, take notes, and ask if you can record it; some will be glad for you to is you just ask.
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Lady: I usually do but this time I was alone
BTW, on the taxotere permanent hair loss, my onc at Yale pretty much said it is nearly non-existent chance and, without saying so much, I sort of got the impression that it might even be a myth! I am sure there are microscopic chances of many, many things but he really seemed to assuage my concerns with his response because I did bring that taxotere-permanent-hair-loss thing up.Liz
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