Taxotere, Carboplatin and Herceptin
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Thank you, lago and nmoss. I guess I do need to keep that perspective. It helps so much to have others on this board who are in the same boat and can give objective and sound advice. The treatment is hard, but the alternatives is worse. Thanks again.
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Amelie_Rose I have to agree with others that the Her2+ part of our diagnosis is the reason the chemo is so important. I had a relatively small tumor (1.2 cm) with negative nodes and I still clearly remember asking the MO, why would I need chemo? She explained that Her2+ tumors have a nasty habit of spreading in ways other than just the lymph nodes i.e. their best guess is that it can spread through the bloodstream. I hated chemo and had many of the same miserable SEs you are struggling with but I would go back and do it again and I wouldn't skip even one. I wanted to know that at the end of this treatment I had done everything within my control to prevent recurrence.
Even now, I have to keep it all in perspective because I have days when I'm just really tired of how much this has impacted my life but then I try to remind myself that although the treatment is not perfect, it's the best thing we have for now and I'm so grateful for it-until there is a cure:)
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dragonfly, i just watched your 'jump for joy' video and it made me cry. i'm so impressed with your courage and your big, happy smile. it's a lovely video.0
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Anemia?
Has anyone experienced anemia? My blood count was low after my first, lower for my second and just had my third yesterday. My blood count is at 9, and the oncologist said if goes to 8 I will need a transfusion. I have been getting short of breath and feeling dizzy when I move too fast. They told me if it gets worse, I will need to go in.
After each treatment it seems like the SEs start earlier. Cramps started today already and I have been totally wiped out. Went for Nuelasta this afternoon. Hoping it will be better than last time!
About HER2+, I talked to the oncologist about it this week. I am ER-/Pr-, HER2+, and she said that yes, it is more likely to reccur and not necessarily in the breast area.
On a positive note, my tumor is gone after the second treatment. I will see the surgeon next week, but I believe I will still have the 6 treatments. My tumor was fairly large and the nurse told me yesterday that because of the size, they will finish the 6. I am half way there!!!
School starts in less than two weeks and I am planning to go back, but I will have to take time off the week after treatment. Fortunately my treatments are on Thursday, so I can work through that day.
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anafoefana - I also experienced lowered counts on TCH. If you are symptomatic and drop to 8 or below they will probably transfuse you. I hovered at about 9 most of the time on #4,5 & 6. I was quite fatigued and my counts actually did not come back up until quite a while after chemo ended - I would say about the 5 week point. That being said - it is pretty common, so don't be too worried. Receiving a transfusion is also more common than you think. If you know far enough in advance and a family member is a compatible blood type you may be able to have them donate for you - usually takes about 72 hours to prepare those units. If you receive regular units there are a couple of things you want to be sure of. You want leuko-reduced blood, irradiated and cytomegalovirus negative. You are an immune compromised patient and you need all of those things. Most oncologists will order units that way, but you need to insist on it. If you have questions about this, just ask.
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Dragonfly, thank you for your advice as well. I guess when in the midst of treatment, it's easy to focus of all the side effects and forget the big picture.... One question though, if the path report says 'no sign of vascular invasion', doesn't that mean that it hasn't travelled through the bloodstream? I don't know, I was just guessing/hoping. Thank God for herceptin!
Anafoefana, I am a bit anemic as well, but don't know my number. My second treatment is Monday. To all of you ladies out there, aside from an iron-rich diet, is there anything else one can do to prevent/manage chemo-induced anemia?
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amelie - I think eating lots of protein help the cells rebuild as well.0
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Thanks, Omaz. I may have read that as well somewhere. It does make sense. I am so nervous about this process and so grateful to everyone on this board...
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Amelie_Rose it if says no LVI on your path report that is a good thing. It doesn't mean it hasn't traveled but you have a better chanc of it not traveling. There are some women with not LVI and no nodes that still get mets. They just don't know everything yet.0
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Amelie Rose Lago is right-My MO said the same thing, although the pathology may indicate that there is no vascular invasion, no nodes, etc (which is very good news), some women with HER2+ still end up with mets over time and they just don't know why. Hence, chemo and Herceptin are our best weapons to eliminate this from happening.
Anafoefana I was anemic throughout TCH which added to the fatigue as well as my weird chemo skin color. It seems like many of us were anemic and crept close to transfusions but ultimately avoided them so it must be common-they will be keeping a close watch on those labs.
YaYa Thanks
I've set many goals (both big and small) throughout this treatment process to give me something to really look forward to during the difficult times...my next one is a trip to Paris/England to celebrate the completion of chemo and radiation-I can't wait!!!0 -
Dragonfly... I just watched your video and it made me cry, too. The joy and freedom are so real. Thank you for sharing it.
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Amelie_Rose-I had mets from the beginning with no positive nodes and it said no LVI also. One of my mets is attached to the major hepatic artery-they don;t know if it was surrounding it or actually thru it. I also have lung mets. The chemo did a fantastic job and I am left with some cancer too small to measure. So they don;t know everything-hiw did those get there?
I see a liver surgeon tomorrow. Discussion will be about going in and removing the part of the liver where the tumor was. Is there cellular level cancer lurking there ready to spread somewhere else? They really have no data on this because ony 2% of people get the response I did to chemo. I see a lung surgeon Thursday for the same thing.
I am willing to risk a huge surgery to make sure every cancer cell they think they can find will be removed. If I have the surgery it will be full liver and lug resections done at the same time. The chemo sucks but stick it out for the whole course. At the halfway point scan they knew I had a huge response-it did make finshing the rest a little easier knowing it was working that well. You know you have had a great response-let that help yu finsih the course
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Lillylady,
I too am having a great response to the treatment. By my second treatment, my tumor was almost gone, and by my third, the oncologist had a hard time finding it all. I am going to see the surgeon next week, but was told I will finish my 6 treatments. Glad to hear you are responding so well. It is definitely encouraging and really helps endure all the other stuff you have to go through.
Dragonfly, as always, thanks for the advice. It is so helpful.
SpecialK, thank you as well. I do not have anyone in my family who has the same blood type. I am ORH-, my children are ARH-, ORH+, and ARH+. My father had my blood type, but he is no longer with us. I worry about a transfusion and hopefully it will not come to that. I am trying to eat as healthy as I can, but there is still the taste issue. I have discovered quinoa, and have been experimenting with with different recipes. It is an excellent source of protein and is bland enough to be tolerable.
Doing okay afte my third treatment, but I know day 5 and 6 are going to be rough. No steroids after today. Last time was absolutely awful, and I am bracing myself.
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lilylady - Thank you for sharing your story. I am so glad you had a great response to chemo. I have always had that thought that some cancer cells could have 'snuck out the back door'. That motivates me to keep with the program. Cancer SUCKS!!!!0
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anafoefana - Having ONeg blood does definitely limit you - you can only receive ONeg, but let's hope you don't need it. Really try to keep your protein intake up, even if you can't taste, or it doesn't taste good. I saw the difference in my counts when I was more cognizant of eating more protein. Quinoa is in vogue right now - I bet you can find some good recipes! I ate cottage cheese and red meat, and scrambled or hard-boiled eggs are good too. Yes, the steroid "crash" is not pretty, is it?
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Anafoefana I had a hard time eating enough protein during chemo because of the dreadful GI SEs. It seemed like I wasn't eating much of anything for the first 10 days and then had to make up for it for the rest of every cycle. I eventually got in the habit of eating cottage cheese, greek yogurt, and scrambled eggs as much as I could during the bad days (when I had to convert to my mushy/liquid diet because of the cramping/big D) . When I finally got to the good days I tried to always eat lots of red meat (something I normally try to limit in my diet but chemo calls for desperate measures!). Somehow it worked overall and even though the numbers dropped and I was anemic, I never needed a transfusion. I'm with SpecialK-the steroid crash is the worst!!! By the way, congrats on being halfway through TCH:)0
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I don't know if I ever posted this link but since you are all talking about great response with chemo/Herceptin I though you'd all like to check this out. This onc was part of the initial trials of Herceptin. Click on the video tap on the page. Listen to the entire video. She describes the response: linky0
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thank you for this link, lago. you've provided some very interesting reading and i've enjoyed it all. i even ordered the film, "living proof," which is the story of dr. slamon and herceptin which i learned about by reading the robert bazell book about herceptin. thank you!0
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YaYa Get your tissues ready! I have a copy of the film Living Proof and have made my family and close friends watch it so that they truly understand how remarkable and life-saving Herceptin is-it makes me cry every time. Every time I get the infusion I am also mindful of all the women in the original trials who paved the way for us-wow! I'm also amazed every time I watch it at the persistence/determination of Dr. Slamon in the face of such adversity...
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Hi all. It's been awhile since I posted, but I have been lurking around and keeping up with everyones comments. I had #4 TCH on 8/17....I only have 2 more to go!! This round has not been too bad. I haven't even puked once...and have only had to use my ativan for nausea twice. But, I did things a bit different this time around. My chemo was on Wed. and on Fri. I went back and they redosed my steriods and anti nausea meds and gave me some IV fluids. It has made a big difference for me. The steroid crash was not as severe and made things more tolerable. I think I am going to do this again for the my last 2 treatments.
I have also struggled with anemia. My lowest Hgb was 8.4 and I have managed to crawl my way back up to 9.7. I have discovered that anemia compounds SE's terribly. When my Hgb was 8.4 my exhaustion and fatigue was tremendous and overwhelming. Eating, getting up to the bathroom, showering, etc. took so much effort and just wiped me out! I have taken Iron which has helped bring my RBC back up, but it has also done a number on my GI system. I go from Big C to Big D....in a drastic way, which is miserable.
Living proof is an amazing story...I have watched it several times and always think of those amazing women on the initial trials. It gives me so much hope that this disease will someday be cured. Although I hate BC, I am so fortunate to have the drugs available to treat HER2+. I can't imagine what it felt like to have this disease before herceptin. I have alot to be greatful for...so many blessings!!
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I just had my 4th TCH of 6 on August 10. This round seemed pretty rough. The soreness in my finger nail beds has made me uncomfortable. The coated mouth and not tasting is taking longer to go away even with the swish and swallow this time.
I watched living proof recently, and cried through the whole movie. I am extra thankful for my herceptin now
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I finished my year of Herceptin about 14 months ago. Still have not had the nerve to watch Living Proof. It is just too emotional for me.
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I started the book but didn't finish it and couldn't watch the movie either.
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I have yet to see the moving but I did read "Her-2: The Making of Herceptin, a Revolutionary Treatment for Breast Cancer" by Robert Bazell (The onc in the link I posted is mentioned in the book). To think this drug almost didn't make it.
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Good Morning Everyone,
Wednesday I have my first of 6 chemos with TCH. I have been reading this blog with great interest trying to use all of your advice to help me through. I am anxious. What is a steroid crash? I am going to try and re-read so I can make a list of the best advice to get ready and have everything I need on hand. You are all amazing, strong women. May heaps of blessing fall on all of you.0 -
Good luck musicalmom! What worked to help me: Ice fingers and toes during taxotere (also did elastogel caps during taxotere); drink lots and lots of water even at night, take anti-nausea meds regularly not waiting for symptoms (but that varies a lot, some women don't get nausea), eat small amoungs as often as feasible with good amounts of protein, rest when you need to, keep up your exercise as best you can. Go easy on yourself. My steroid crash was sleeping the entire day 3, counting infusion day as day 1. I also got red face from the steroids as well as some belly issues. Can't go without them though because they help protect from fluid retention with taxotere.0
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musicalmom - the steroid "crash" happens when you have taken your dosing of steroids just prior to chemo, received some with chemo, and taken them for a couple of days afterward - which can make you a little hyper, or at least give you some energy, and then when you stop them you "crash" or have zero energy. Unfortunately, this end of steroid depletion of energy can coincide with the onset of SE from the TCH, so you get a double whammy. Doesn't happen to everyone - you will have to wait and see. I did not get the before, during and after steroids for the first few TCH - only received them on the day of. After #3 I developed a rash, which I think was from an antibiotic prescribed for a UTI after tx#2. I have a long history of antibiotic allergies. Because they could not rule out an allergy to Taxotere they increased the steroids and I experienced the "crash" with the rest of my tx.
I would recommend having all your over-the-counter meds ready, if your onc says they are ok - like stuff for Big C (BIL the gastroenterologist recommends Miralax) and Big D (Immodium) but don't take either until and unless you have symptoms. I never had Big C, but did have Big D in spades. Pay close attention to your anti-nausea instructions from the onc nurses. They instructed me to take Zofran first - it did not work for me at all and compounded an already brutal headache on tx#1, I should have proceeded to the next anti-nausea med faster than I did. Did not get nearly as bad a headache on any subsequent tx. Definitely ice fingers and toes - I brought small bags of frozen peas with me - my center did not have ice mitts. I also brought a thermal cup of crushed ice to try to keep in my mouth during the Tax portion of the tx. Limit acidic foods - to keep away mouth sores. I also used Biotene toothpaste and a soft toothbrush. I found my fingers and hands needed a lot more moisture - started using cocoa butter and Aquaphor with golves and socks at night to keep them from cracking. Also heavier moisturizer everywhere else too. Took L-Glutamine/B-6/Acetyl L-Carnitine combo to ward off neuropathy - get your onc's approval first.
I am sure others will chime in with other handy hints! Good luck - the anticipation is the worst - once you start you will be fine!
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Musicalmom I had chemo on Tues and by Friday morning I would feel extreme fatigue that lasted until Sunday and then would begin to lift again-that's the steroid crash (I still worked on those days but felt like a zombie). It's just rough because it happens during the first week of the cycle when you are battling so many SEs (just when you don't need it). You'll do well. Take it one cycle at a time, stay ahead of the SEs as much as possible and drink LOTS of fluids. Ask any questions as you go along-we are all here for you-Best wishes!0
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musicalmom - Are you getting neulasta? If so consider taking claritin to ward off bone pain. Start day of shot and continue for several days. Of course check with your onc, this is what my onc had me do.
SpecialK - I got my full 50mg dexamethasone from the night before and day of chemo. No tapering off or anything,
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Musicalmom - I had chemo on Thursday and on Fri/Sat I had SO MUCH energy from the steroids (which were given in the chemo IV) that I literally could not sit still (or sleep much at night). By the end of Saturday, I would say "Elvis is leaving the building" as I could feel the steroid energy fading away. I never really 'crashed' and didn't have to stay in bed or anything, but definitely wasn't wired the way I was the first 2 days.
And then for me, the next day (Mon) the GI symptoms would start.
You really have to wait and see how YOUR body reacts. This thread is a huge help, but please don't read it and think you might have ALL the symptoms you read about. That would be overwhelming. For instance, I had never read about the icing fingers/toes (it wasn't written about back in '09). But I never had any problems with my nails at all. I had a big facial breakout after the first tx and was HORRIFIEDat the thought if it happening every single treatment. But it never happened again, just that first time.
So stay open minded and try not to be too anxious. Take each day as it comes and realize that NONE of these symptoms last forever. You just get through them. Come here with your questions. The good thing about this thread is that SOMEBODY will have been through what you are facing and be able to help you.
Amy
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