Neoadjuvant TCHP - Post Results Here
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It is amazing how different everyone's appetite and digestion is during this same treatment. My appetite was pretty good the whole time, a couple of times I had some mouth issues but overall my taste buds didn't fry. My issue was really bad constipation so I had to eat foods that were gentle on my gut until that passed (it was usually the week after my dose that it was bad). My weight was stable up until radiation therapy and I don't know why but I gained around 8 lbs, perhaps from being in the car for hours each day as I had to drive my son across town to his school and then to the opposite side of town for treatment for the 7 weeks. It made it hard to get much exercise, especially since my skin hurt a lot to move. I started back to exercise in January and have gain muscle mass, which weighs more than fat, but I still have some extra subcutaneous fat all over my body that has caused fit issue with my clothes.
My physical therapist told me not to starve myself or doing anything drastic to lose weight right now as my body has a lot of systems still recently coming back online after being depleted from extended breastfeeding (I believe the cause of my disease) and then the treatment itself. I'm optimistic that with regular exercise and conscious eating, that my body will eventually trust that it isn't going to have to deal with starvation conditions and might shed the extra weight. For now I'm being patient.
--------If you are having diarrhea issues, bump up your intake of foods containing potassium as you are losing too much of this electrolyte from the taxol treatment, one of the actions of the drug is to push potassium out of you.
Potassium disregulation can also lead to issues with magnesium in the body, not to mention that carboplatin pushes magnesium out of the body as well. Most Americans eat diets low in magnesium and, as I've learned personally, restoring magnesium when you are low takes a lot of time. You can ask your MO to check your serum magnesium at your next draw, or even better, your RBC magnesium which is indicative of your magnesium stores. I take Magnesium Calm supplement which you mix with water and sip slowly, a cal-mag supplement, leafy greens, nuts, small amounts of extra virgin coconut oil, and sometimes I do epsom salt soaks which allows your body to absorb magnesium sulfate through your skin.
Improving your vitamin D status will also aid in magnesium absorption, and improving your magnesium status will help improve your vitamin D status. I came across a study that was done in France and evidently when comparing the sun to dietary supplements or foods containing vitamin D the sun was the most effective source of vitamin D. I'm tried to track it down again but its in pubmed somewhere. Sunshine gave close to 100% of the needed D, vitamins and foods containing D were paltry in comparison. Getting about 15 minutes of sun exposure on your bare skin several times a week, plus taking supplements and eating d-containing foods was recommended for most folks. Incancer patients it has been noted that most of us have poor vitamin D levels so getting more sunshine and supplements is worthwhile.
Make sure you are taking a good probiotic daily and eat probiotic foods (miso, fermented cabbage, kimchi, gouda cheese, yogurt, etc.) and prebiotic foods (oatmeal, chicory tea) to help your gut function return toa more normal level. Chemo is incredibly damaging to your microbiome in the gut, way worse than antibiotics.
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stephmoen - Do be sure to let your doc know right away. If the Imodium doesn't stop the Big D, you'll need something stronger - maybe Lomotil. I got an extra full bag of fluid with every treatment then went back to the infusion center between every treatment for another bag of fluid. Dehydration is a major worry. Just keep taking nutrients in if you can. I lived on Carnation Instant Breakfast with an added scoop of protein powder.
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So does everyone have diarrhea with perjeta? i don't know much about it. Is it new?
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Steph: Hang in there. Like others have said take the Imodium and call your MO. For me, the D and stomach pains hit on day 5--just when I thought I was on the upswing--and lasted about 5 days. Extra fluids might be a good idea. I, too, tend to be underweight. The steroids before each treatment made me voracious. I allowed myself to eat as much of anything I felt like eating just to keep the weight on.
I'm sending you strength from the sisterhood, honey!
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Alibeths, I had it but not very bad or for very long.
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stephmoen, in a few days you will be feeling great, I really believe this. It's just the first few days that suck. But spend the next 2 weeks regaining your strength and eating loads of food to put your weight back up. The next treatments will kick more butt so take this as a starting point and hydrate and care for your body on the days you feel good
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I had diarrhea every single cycle-- took max amounts of immodium AND lomotil and stuff like Questran... Nothing worked to stop it. I didn't want to eat or drink but it didn't matter if I did or not because everything went right through me. I had to be hospitalized with IV drip (and potassium and magnesium added) first two rounds for 5 days each, then had two weeks of home IV drips for the last 4 cycles. I'd lose about 10lbs each time, then gain it back.
Carnation Instant breakfast was all I could get down through most of those days. Sorbet was good, too. But everything else tasted horrible--like card-board, no matter how many anti-nausea pills I took. My stomach burned and ached... Pepcid actually worked for that, but nearly everything else didn't seem to do much.
My MO had me on L-Glutamine powder 3x a day to keep mouth sores away (no mouth sores, so maybe that worked? hard to say!).
I also had some neuropathy in my lower legs... no pain, just weakened muscles (I thought it was just muscle atrophy, but got a nerve test and it wasn't just that, but the actual nerves).
BUT--I've just finished my 6 cycles and my appetite is coming back and so is the taste of food. I wonder if I'll blow up like a balloon now that I can stand eating things??? I hope not. I'm down 20lbs. from my pre-cancer diagnosis... That's actually not a bad weight to be (was a tad over-weight!). But I really can't wait to eat!
I'm seeing my surgeon on Monday. Still have to set up the surgery. I haven't see a Radiologist yet, so I have no idea what that schedule will be like.
I'm still getting Herceptin every 3 weeks... sort of like getting chemo, but without the chemo! I'll go for my first infusion of that next week... I'm hoping it won't give me the terrible diarrhea that I've been experiencing... I really don't want more IV drips!!!
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April - I didn't have Big D problems with Herceptin only, thank heavens.
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Runningcello--Deary, that just tugs my heart strings. It sounds like you really struggled emotionally. I know we all do, but I'm sorry for the way it hit you. So glad that's over and you seem to be in a better place in your own self.
Stehp--you poor thing. I only took the imodium once. I had to go for an MRI one week after my first treatment and be still for an hour, so I took that so as not to soil the MRI machine!! I didn't get constipated. Even if you do get constipated, there are things you can do for that too. For me, the diarrhea was the worst in my first treatment, then my body adjusted and I didn't get it as bad. I took high quality probiotics--still do--it really does help with this. Diarrhea can ruin your GI track. The probiotics will help heal it. If your bum is sore (sorry to be frank) then make sure you put a zinc cream or something after each time you eliminate. There are food guides that can help you moderate your bowels too. The BRAT foods will help diarrhea--other foods help the constipation. I know it's crazy, but make sure you drink, drink, drink!!! Diarrhea worsens if you don't drink--which seems backwards. Asking the chemo center for extra fluids is helpful too. I was allowed to go in any time I needed for that. When you can, eat for calories.
For your mouth, there is a special mouth wash that people keep talking about--I think it's called Miracle Mouthwash. The ladies in my support group talk about it. You can also use Biotene. I personally found comfort for my mouth by using non-iodized salt water mouth rinses. Make sure the salt has no iodine and use warm water. This was incredibly soothing to me. The last thing was that I got my dentist to give me a special toothpaste--Prevident 5000 for sensitive mouth. It has a super, extra mild mint that doesn't aggravate your mouth.
I'm so sorry it's hitting you hard now. I remember at certain times with each treatment, I thought, "I just can't take anymore of this!" My husband would hold me and just let me cry. It was so, so hard. But I made it through....and so can you. YOU CAN DO THIS. It promise it will be worth it when you are done and looking back. Hugs.
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MinusTwo -- Great to hear that you don't have the big D with Herceptin. I'm still waiting for mine to go away after my last chemo... I get my first infusion of Herceptin only on Tuesday and would be very unhappy if it kept giving me D (since it means IV drips/dehydration for me). I guess I'll see. But most people seem to tolerate the target treatments only pretty well, so I'll be hopeful!
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April--Most people do tolerate Herceptin only pretty well. Since that was what I had been told, I went to my first one with a full day prepared afterward. I didn't know it was going to make me nauseated! I was stuck in town that whole day, feeling yucky, though not so bad as chemo. Now I bring my zofran with me. I only need it for a day and then I'm good. The pharmacist told me that my reaction is normal, but not common. So I'm just putting that out there.
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MombieZombie -- Thanks, that's good to know! I still have my prescriptions for Zofran and Compazine... I'll make sure to keep them handy in case I need them.
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April: Congrats on finishing chemo! Ugh. What a difficult time. I still have problems with D (4 months PFC), but it is getting better. Like Mombie, I am taking a probiotic and really watching what I eat. It takes some time for the gut to recover. Good luck with your surgeon on Monday!
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april, congrats on finishing chemo! I remember when you first started posting after being diagnosed, and now you've made it to this milestone.
For me, Herceptin-only infusions have been a non-event. I have some slight GI issues still, and my hair is growing slower than normal I think, but it's all very tolerable and not a big deal. I had another echo done yesterday to keep an eye on my heart. That's the thing that scares me about Herceptin, and I'm hoping that my EF is still normal so that I can continue getting the infusions. I think I have 6-7 left (17 or 18 total?).0 -
thank you everyone for the pep talks! I know I will get through it just like all you girls did although it's going to be a rough road it will be well worth it! We are also lucky to be able to feel our tumor shrink before our eyes it's crazy I can barely feel it already after 1 treatment!! Keeps me going. I had blood work yesterday and I recieved the results through mychart and my wbc are critically low called my dr and she said it's normal but 0.9 sounds so low to me when normal is 3.8 to 10.6 it scares me and when I asked about the shot she said it causes too many side effects and doesn't like to use it.. Did anyone else not receive neulesta shots? I have a 1 and 5 year old and he's in kindergarden a little germ pool!
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Steph, my MO gave me a Neulasta shot after every round of chemo, as a matter of course. I know some people get daily Neupogen shots instead. Practice really good hygiene (wash your hands often, don't touch your eyes, etc.) and be very careful about the germs you allow yourself to be exposed to. I wonder what SEs your MO doesn't like about the Neulasta? I had terrible bone pain from it, despite Claritin and Tylenol, and later Norco, but if it kept fevers and infection at bay then it was worth it.
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is te diarrhea from Perjeta??? Ugh. And did everyone do 6 treatments
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stephmoen, it's weird your doctor hasn't prescribed neuselta after every chemo sessio. It really kept my counts high.. I would keep an eye on your counts after each session because sadly they typically drop more after each session
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diarrhea is definitely from perjeta.. At least we know that demon works well since we poop our life away, lol
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DaisyQ -- 'Hope your D goes away soon. Thanks for the warning that it might take a while for mine to go away. As long as I don't get dehydrated enough to need an IV drip, I think I'll be happy, though. Dragging that thing around for weeks was definitely no fun! I guess I'll have to see how it goes...
CassieCat -- Good luck in avoiding any bad side effects with the targeted treatment. Yeah--the heart thing worries me... I wonder when I'll be getting another echo? I don't think I've been affected so far, but I was definitely easily out of breath a few weeks ago when I tried to water my little garden... made me worry! Maybe I'll mention it to my MO...
But I am hoping that my Heparin infusions will go smoothly. And thanks for the congrats on getting through chemo. I'm VERY glad to be through with it! It seemed like it was taking forever! ... Most of the people who started Chemo around when I did, in December, are finished by now. It's so nice to see everyone get through it.
Stephmoen -- That's fantastic that you can feel your tumor shrinking! Mine shrunk a bit, too... I'll have to check with my surgeon to see if the MRI showed how much it shrunk, though. But my MO was pretty sure it was smaller when he last checked by touch.
I always had prophylactic shots after chemo-- 5 Neupogen shots the first cycle, then changed doctors and had a single Neulasta shot after that. I never had low WBC and never had any side effects from the shots. My school-age nephew caught something nasty at school and my brother-in-law also caught it, but I managed to escape without getting sick the whole time, even though I am staying at their house--so the shots seem to work (also had flu shot before chemo).
I have a friend who has kids who is doing chemo for a different type of cancer. He didn't have shots and just had to be admitted to the hospital due to a fever and low WBC... I hope he gets a shot the next time!
Alibeths -- Most say the D is from the Perjeta, but my MO seemed to blame it on the Taxotere... It is probably both or either! It's hard to tell what side effects some people will get from what, since everyone seems to be a bit different... I'll be off both taxotere and perjeta now, so I'll see if the D goes away!
I did six cycles, three weeks apart, of Taxotere/Carboplatin/Herceptin/Perjeta. Taxotere was slightly reduced after the first round due to side effects.
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I agreed with my MO that the diarrhea was from the Taxotere, but who knows for sure since Perjeta is so new. Did anybody continue Perjeta with the Herceptin for the rest of the year? I declined since neuropathy is listed as a minor side effect of Perjeta. Even though all docs say it really isn't, I wasn't willing to take the chance & make what I already had worse.
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I won't be getting Perjeta... I wonder why some people get it and others don't? But I'm glad not to have to worry about it. I've got weakness in my legs from neuropathy, so anything that will not add to that would be great!
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April- I have Herceptin only tomorrow. I am farther away from chemo so I will know any SE I get in the next couple days will be Herceptin related. So glad you made it to other side I never thought I would finish. As it was I only could do 4. That darn Herceptin better not slow our hair. I want my hair back. I have been cooking and got 2 meals frozen. Surgery one week from tomorrow
Cassie- how are you doing? Any plans for this summer? I had echo and my baseline dropped from 65 to 55. MO okay with this though
Have a great Sunday. I am typing on my phone and my pointer finger is worn out.
Love to All!
PMR53.
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Someone I know was hospitalized after the first two rounds of TCHP and her MO switched her to weekly taxol instead and she was able to complete the duration.
I only know one person who was on Perjeta for a year with Herceptin. It isn't part of any protocol that I've come across to do it that way. I had a seventh dose between my final chemo dose and my surgery and Perjeta is still harder on your body than Herceptin alone I observed. I felt quite poorly that round.
Congrats April25 -- it seems like forever since you first posted here. You did it girl! Will you be having surgery soon? What about follow up imaging?
HTH
Ann
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PMR53 -- Well, I hope for the sake of all of us on Herceptin that you don't experience any SEs!!!
And many good wishes for an easy surgery! I just saw my surgeon today. He sent me for an MRI last Friday and then for a Mammogram (a bit hard on my port, actually!!! They tried to get as close to my chest-wall as possible and that meant rubbing up against my port! Geesh, I can't wait until they come up with some sort of alternative to mammograms!!! I can usually bear them OK, but the fact that mammograms didn't catch my cancer still irks me! Why go through the torture if they don't even work that well in screening???).
Anyway-- the person scheduling the surgeries left by the time I finished with the mammogram... So I'm still not scheduled. Might be next week, might be after that...! At first my surgeon said a LX would be no problem... now it looks like they will be taking quite a bit out of my breast (which is on the small side, particularly after not eating through most of chemo... weight came right off my breasts first-thing!). He was sounding a little less sure about the LX because of that. Now I'm left thinking my tumor didn't shrink as much as I'd hoped and the surgery might not be leaving me with the best results... Has anyone ever had to have a "bracket" in place to use as a guide for the surgery??? Yikes. But he still seems to think LX is slightly better than an MX... I guess we'll see. *sigh*
agness -- I should be having surgery soon... but will have to get it scheduled, hopefully tomorrow, so I don't know exactly. Had an MRI and a mammogram... They are a bit vague about how much tumor has shrunk... When they try and feel around they say they can barely feel anything at all, but they don't sound so enthused when it comes to the results of the screening...! Ah, well... It is what it is, I guess!
But I am SO HAPPY to be through with chemo! It did seem to last FOREVER! I'm still trying to get used to the idea that I can move around a bit more easily (without the IV drip!), and might actually be able to eat normally soon! Actually, my appetite is pretty much back... although my digestive tract is still kind of upset.
Hair growing back quickly would be nice... but I still seem to be losing hairs from my eyebrows!!! so I'm not at all that hopeful about seeing my hair come back soon! I'm just hoping to keep the last bit of my poor eyebrows... if only so I know where to draw them in more easily!
Ah, well. Done with chemo. That's good enough for now. And LX is an outpatient operation, which is fine by me. Too many hospital stays through chemo to make me want to stay for a while in one again any time soon!
AND--I will be having radiation no matter what... Haven't yet seen a Radiologist, so I have no idea what that will be like! So I still feel I have a long way to go with this thing...
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I met with my MO and he is strongly not for radiation 90/10 against. Interestingly enough I did not have a pCR but had a very good response to TCHP. 1.5mm tumor remaining (shrunk from 5cm-6cm with original biopsy sites having pCR). Good margins with BMX. He is recommending the KATHERINE Trial which is randomized T-DM1 (KADCYLA) or herceptin. The TDM1 is still chemo so there are SE, just supposedly not as bad (check the ATTEMPT thread). Is anyone else thinking about this or has this been discussed with you? The no radiation has thrown me for a loop (as I was ready for it in September) but I will get another opinion and I am not against no radiation. The main thing the MO said is the nodes were negative. The RO wants to do the standard of care, 5 days a week for 5 weeks.
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Hi Ladies ... I hope everyone is doing ok considering what we are going through... I was suppose to go for my 3rd taxol treatment today after it was cancelled last week due to low neutrophils counts. But the counts are still to low so no treatment again this week... I still have 10 more to go. I have only had 1 herceptin/ perjecta treatment so far and that one made me pretty sick. I might get finished with chemo by the middle of July. I started treatments December 16 ...The PA kept telling me the Taxol/Herceptin/ Perjecta was going to be so much easier than A/C ... I am still waiting on the easier part... The oncologist told the nurse he is going to lower my Taxol dosage to see if it will keep the low counts from happening again.... Guess we will find out one day ... I am HER2/positive 3+ ... stage 2a ...estrogen 99% / progestrogen 99% ..... surgery after chemo, then radiation followed by arimedex. That is if I ever get finished with taxol ...
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hi Sophie did you recieve the neulesta shot after your treatments? I had my first tchp on April 16 April 25 I was running a temp ended up in the emergency room and I'm still stuck here is the hospital my wbc count was at 0.7 when it should be at 3.8- 10.6 and my ANC which is the neutrophils the wbc that attack was at 0 so I had absolutely no immune system which is why I'm still stuck here my counts are going up wbc is now 1.9 and ANC is 0.13 hoping they are even higher today so I can go home. But I did NOT recieve the neulesta shot after my treatment which upsets me I will be recieving the shot after all treatments from now on. I'm starting to go store crazy and missing my kids
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Hi Stephmoen, I hope you get to go home soon. I didn't get the Neulesta shot. It's funny, the oncologist's PA told me I wouldn't be needing them with Taxol/Herceptin/Perjeta. She also told me T/H/P was going to be so much easier ... Well, she is not right this time. Different medicines, different side effects. I had the Neulasta shots after the 3rd and 4th A/C treatments. I was put in the hospital after the 3rd treatment because my neutrophils count was 0.5 and I had been running a fever. I was given antibiotics and fluids. It was five weeks between treatment that time. My A/C dosage was reduced for the 4th treatment. Now here I am after my 2nd taxol and last week the neutrophils count was 0.8 and this week it is 1.2 ... The nurse said it had to be 1.5 for treatment ...Hopefully it will be high enough next week. Everyday it's something different on the journey. The fatigue is tough already too ... Take care ...
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sophie14 -- Oh, wow... sounds like you're having a tough time! I really do hope you're getting neulasta shots, at least! (Or neupogen!) Sometimes those don't work well enough for people and they still have low WBCs, though... It's just one of those SEs that happen with chemo, unfortunately.
I was lucky. I had Neupogen shots the first cycle and Neulasta after that, and never had WBC problems... also never had problems with bone pain or aches from the shots.
Of course, I did have my taxotere reduced because I had to be hospitalized due to dehydration (from diarrhea) the first two cycles (so the reduction didn't really make much of a difference!!! -- My MO lowered the taxotere after my first cycle). And had to do home IV drips for 2 weeks each of the other cycles... (that was a pain! I'm still a bit dehydrated now, off the IV drip, since I'm still getting a bit of the diarrhea even after my cycles are done-- although it's only been done for a few days!). That was my big SE problem with TCHP.
I've still got a year of Herceptin ahead of me, but I'm hoping that will be OK.
What SEs did you have from the H&P?
I'm not counting feeling totally wiped out and having no appetite and feeling stomach aches and some nausea... Anything I don't need to actually be hospitalized for pretty much didn't count to me! Chemo was definitely no picnic... I definitely feel for you all having to deal with this.
... I hadn't heard of too many people mixing up A/C and taxol and H/P... I thought it was usually either TCHP or A/C. Were you getting switched back and forth because of SEs? Or was that just the plan from the beginning? --due to your particular situation?
Stephmoen -- There seem to be a fair amount of people who don't get the shots prophylactically from the beginning. I really don't know why, as it seems that having problems with low WBC is worse than putting up with possible bone aches... and if you get the bone aches very badly, I'd guess you could always stop the shots. I just had a friend (different cancer) have to be hospitalized from low WBCs... he didn't get the shots either. Seems like a lot of extra worry and problems -- and expense-- that might have been avoided!
I hope the shots work well for you. Try the Claritin and Tylenol if you worry about bone pain. I took those the first few times, but never had aches, so I just stopped for the other times...
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