Neoadjuvant TCHP - Post Results Here
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@ fidget. I had "D" too. Fortunately I usually got it over with by noon. If I went anywhere I carried a"D" bag. Wipes, clothes etc. Best thing I ever got was a hand held bidet. If not for that my booty would have been in bad shape. It hooks into the water line on your toilet and the spray hose hangs where I can reach it easily. After each toilet use, I just spray it off real good, apply A&D ointment. It has been a lifesaver. Only cost about $40.00. I know it sounds crazy but it works. Good luck.
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Thanks cchix49. That sounds like a good idea. I went for labs today and as soon as I got there I had to run to the potty. Ugh. They said my bloodwork looked great, but I've lost 8 pounds since Friday. They want me to double up on Imodium pills 2 every two hours until diarrhea stops for 12 hours. I'm to check back in 48 hours. They said to follow the BRAT diet plus bland protein. They said not to follow it to a tee because it's not enough nutrition. They did give me a rx for my sore booty. Hope it helps.
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Edwsmom, the Herceptin and Perjeta were loading doses for me the first time as well. They gave me the dosages Rx, so I know the subsequent treatments were half as much. My most lingering SEs are nostril sores, but Aquaphor really helps me with that although it doesn't completely heal them. I also have mild neuropathy in my fingers that started affer my 4th TCHP. My 5th treatment is Thursday and this time I'm taking an ice pack to see if I can lessen it. I've also been taking B-complex for a couple weeks that my MO suggested and I think it's starting to help now. I've read here that L-glutamine powder is something else to try, but I haven't yet. I try to stretch my fingers a lot too, and keep them moving which helps. BS suggested acupuncture and I've heard others say they've had good results with it. Salt and soda rinse has really helped me with mild mouth sores. But, the biggest key for me during treatments was hydration, hydration, hydration! Best wishes and hugs.
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There was absolutely nothing I or anyone could do for my D. Loading dose didn't matter... every time I got an infusion, 4 days later I was in the hospital getting an IV drip for dehydration (for the first 2 times, then got home IV drips for 2 weeks solid each cycle after that). I was taking max. amounts of immodium AND the prescription drug. And I was taking Questran powder. That didn't help. They were thinking about giving me morphine or something because that can slow the digestive system down, but they didn't.
Diet did nothing. Drinking more did nothing. All that doesn't help when it's going straight through your body!
Had a bunch of c-dif tests at the hospitals. Nothing. It was ONLY caused by the chemo because it would stop for a few days towards the end of the cycle and start up a few days after my next doses.
Yeah, the panty-liners helped, although suprisingly, I didn't have many accidents, considering how bad I had it. I just had to run to the bathroom a lot... and often didn't get a solid night's sleep because of going at night. And I'd use vasilene or aquafor a bit if things got a little worn-out down there.
After chemo, I continued to have D for months, BUT I didn't have to have any more IV drips, thankfully. By then I was getting hemorroids and just used Prep H, and thankfully, that went away after a week or two.
I'm still getting Herceptin, and still have a little bit of D now and then, but nothing like before! I think I'm still getting over the chemo.
My MO was pretty sure it was the Taxotere causing my problems. He reduced my dose, but it didn't do anything either!!!
I'm wondering if the reduced taxotere might be behind my still having cancer cells (no complete response)? But I'm pretty sure he wouldn't have reduced it if it made things much less effective. I'm guessing whatever I had just wasn't that kill-able by TCHP...!
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Hello! To add to the data and help others, I'll post my results here too. Anything to help out:-)
Im on #3 of six rounds of TCHP; chemo first then surgery because tumor attached to skin and, the docs were trying to all be polite about this- my boob's too small. The tumor took up the entire breast! (I took a bad injury to the boob & thought that growing mass was just more scar tissue, not cancer!)
So far, SEs;
Oddly, the WORST side effect was from an anti nausea med included in the infusion, something called Aloxy. It made the TCHP seem tame. Once the doc eliminated Aloxi, the actual chemo wasn't as terrible as I'd feared...
-dry skin, & sensitive skin that varies depending on part of week. Random pimples on scalp. Mild rashy chest/neck area and on cheeks (the face!)
-drippy nose that oddly seems dry at the same time
-fatigue level varies, worse early & midweek after infusion, but doesn't interfere with work. Less stamina and some days limbs feel "heavy" and muscles sore. Other days, they feel normal.
-soft stools (horrid constipation was from Aloxi), not always diarrea but not normal firmness either. Gassy and not able to eat large meals- smaller portions more frequently. No nausea, but I've been driving seagoing vessels for a long time, desensitized to seasickness/stomach tossing!
- overactive saliva glands! WTF?? I drool on things if I'm not paying attention. Super dulled sense of taste, seems like taste buds have been flattened or smoothed out.
-sleep is irregular
-can't forget: hair loss!! During 1st round, loading dose, Head hair fell out leaving a "Mohawk" on top and back. Pubes & nose hair gone.
- Sun damaged spots on hands &arms clearing up.
-chronically low WBC, but no fever so far (knock on wood)
-dents in finger nail growth pattern.
-weight gain (maybe from steroids? The medical marijuana?)
Can so far work around these SEs. I could NOT work around it when I had Aloxi. Tumor dramatically shrank to near 1/4 of its size after 3rd round. A few of the handful of swollen nodes can no longer be felt. An "ECHO" scan done on heart shows 70% on the left ventrical whatsit. Before chemo it was 71%. Doc says this scan has error range of a few percent.
Additional treatments along with chemo:
-hypertherapy.
-yoga and cardio exercise
-medical marijuana (only during first one and a half weeks after each infusion)
-IP6 supplementation. LGlutamine. MSM. High protien diet (seafood & vegetarian)
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Hi all, so I finally have something to report. Had an echo a week ago Thursday that showed no change in heart function.Yay!! Also had a MRI the next day and it showed significant decrease in tumor size plus previously affected nodes are now clear, so I guess the TCHP is working. Yay!! Just had my 5th round this past Thursday and so far I'm doing pretty well. Usually, the Saturday after I start feeling queasy, but so far so good. Steroids make me hungry though, but I'm trying to just eat small, frequent meals and stay hydrated. My nose sores are much better, but the worst now is probably the neuropathy hanging on in my fingers, nails are rippling with some dark spots, otherwise, I'm plugging along pretty well. Next up, back to the BS to plan out surgery. (((Hugs))) to you all.
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Hello all! What do you think about this...I had a 6.2 cm tumor at beginning of TCHP. After manual exam at 2nd treatment oncologist said tumor shrunk 30%. After 4th treatment oncologist said he could not feel tumor at all. I saw surgeon 2 weeks after last treatment. Surgeon said he could not feel tumor. After surgery, surgeon said surgery went well and was successful. Then when I returned a week later to have drains removed, he said he removed a 4cm. tumor and 2 of 12 lymph nodes were positive. I asked if I was cancer free and he said yes. Then I saw my family doctor for yearly check up and he seemed pleased with the report he had on my surgery. Then I saw my oncologist this week and asked how can you be sure you are cancer free if you had positive nodes. He said I had a very good response to treatment and let's see where I am in 2 years. He will monitor me closely. I go back on herceptin every 3 weeks until next June and tamoxifen for 2 years and then arimidex for 8 years. I feel confused or is this usual answers you get. You would think a 4cm. tumor would have been felt. It was deep and into chest wall so maybe this is why. I have another appt. with surgeon in10 days and will ask about these things. I am just wondering if anyone has had this experience. I am impatient and my mind is racing about if the cancer is spread. I have an echo next week before I begin herceptin again. I had issues with racing heart during TCHP. I also mentioned to my oncologist that my back aches a lot and I can't walk or sit long because of the pain. I thought maybe it could be a se from TCHP and neulasta shot. So I have a bone scan next week too. Anyone have back aches from TCHP or neulasta shots? Geez, it like this is one thing after another. I am feeling anxious and any thoughts would be appreciated.
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I finished six rounds of TCHP two weeks ago and am slowly recovering. I had a mammogram and ultrasound this past Friday and even though no one can feel the tumor or lymph node any more, testing showed they only shrunk by about 30%. I was a little disappointed as I had hoped they would be gone. I am waiting for a surgery date, either October 15 or 21. I will have a lumpectomy on the left and an excision all biopsy on the right for FEA. The surgeon will also do a SNB and told me that I may also have to have ALND depending on what they find. My original tumor size was only 1.3 cm now down to 9 mm and my lymph node was 1.1 cm now down to 8 mm. Should I still hold out hope for a pCR even though the masses are still showing up? They had trouble finding and measuring the breast tumor because it had basically collapsed into itself.0
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Hi cchix49, I haven't had surgery yet, but that's kind of weird that the BS first told you after surgery the tumor was gone and he didn't remove anything, but nodes, and a week later said he removed a 4cm tumor?
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@bjsmiller. Exactly what I thought too. I see him again in couple weeks and will def have questions. I feel betrayed that I was led to believe things were better than they really are or maybe I misunderstood. But it is what it is. I am making progress and I'm ALIVE.
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there can still be scar tissue left over that shows up in scans and be felt I believe..going on 2 weeks to get my final path results I'm going insane!
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Stephmoen--2 weeks!? Have you been calling?
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yes so frustrating they said they resent it out because they couldn't find any cancer cells..that's good right the point of neoadjuvant chemo but I'm just upset I haven't recieved a final report ye
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well results are pcR but they couldn't find my tumor marker inserted during biopsy? My dr thinks it could have migrated to my muscle or just fell out during the surgery that's just great I'm upset about this I wang to be happy no residual cancer has been found but what the hell happened to the marker
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Hello Everyone...
Well, I'm heading for chemo #5 on Monday 10/12... I figured after the week I just had, I'd post my results for chemo so far, maybe it'll help someone else.
Round 1 (7/23) - I got a rash all over my chest, it didn't itch, but started to creep up my neck, The chest rash was red and pimply, While the stuff that was on my neck, some on my chin, and then scalp, was just bumps. They went away by 2nd treatment. Food turned to chalk in my mouth for the first week, then I was able to taste everything.
Lost my hair bu 2nd week of 1st round... Totally gone by Round 2, except I still have eyebrows and most of my lashes right now.
I have a drippy nose off and on through all treatments. Gummy eyes most of the time...
The Big D made a showing and still shows up, almost violently, throughout the cycle. Took Immodium and it kept it kind of under control.
Fatigue, fatigue, fatigue!
Round 2 (8/11) - no rash after treatment. terrible constipation first 4 days. Had to take Magnesium Citrate! Never want to do that again! Worked, but horrible! Big D returned and was off and on throughout again with Immodium. Food only tasted wonky for a couple of days, then able to taste everything normally.
My WBC was low right before Round 2, so they had to run another CBC before starting chemo. They drew the bloodwork, and started my Perjeta and Herceptin, before pre-meds, so that I could at least get them, if my counts were too low for the chemo. Bloodowrk was fine so they continued with the pre-meds and chemo after H & P. That round was much more tolerable than round 1, and subsequently, they went back to the original protocol for Round 3 and it was horrible to get through.
Round 3 (9/1) - HORRIBLE! Day 1-21 just fatigued beyond measure. I couldn't do anything. D was a constant and had to keep taking the meds for it, bumped all my fluid intake to double, and I'd been drinking a ton... MO ran STAT bloodwork and it was all fine so we kept my fluids up and headed for Round 4. also told to rest more and do less. The thought that my fatigue was from doing too much....
Round 4 (9/22) - I requested the Round 2 order of drugs again, and it made a difference as far as tolerability again, with the exception of going into week 3. I should have been feeling better, with counts coming up, but I was still fatigued to the point where I couldn't hold my head up and walking room to room was causing pounding heart rate, felt I was dehydrated, and I just felt awful. Went in for IV fluid on Wednesday and kept telling them I'm drinking and eating a ton, so MO ran STAT bloodwork while there. My hemoglobin was lower than acceptable, so I wound up having a blood transfusion yesterday, to bring my hemoglobin up. They say it'll be 24-36 hours before feeling a bit better. Last night I was tired for bed, just felt tired, not beyond exhausted, so that's a bonus. Praying that the transfusion is doing it's thing. MO says she will drop chemo dosages for Monday's Round #5. That's if the CBC comes back with good platelets and hemoglobin up so that I can have chemo...
2 more to go!
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cchix49, yes, celebrate your progress and you are alive!! @stephmoen, I think that's such good news and you should celebrate, but I do understand your frustration. Surely, the marker will be found in some scan to definitively know where it went?
I'm very fatigued after my 5th TCHP and my taste seems more whacked this time, so I haven't been eating much. On the plus side, my eyes aren't as goopy and my nose not as drippy; thankful for little victories.
Hope you all have a wonderful weekend.
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I got the "oh, I can barely feel the tumor" several times from different docs during my chemo. They were just feeling me up, no actual tests, though. I could still feel my tumor, though!
I was a bit surprised there wasn't something more to test if the chemo was actually working!
As it turns out, my tumor only shrunk a little and I didn't have a complete response at all. I guess they figured they'd still just do the same thing... chemo, surgery/lx, rads, targeted and hormonal treatment, after, to try and kill of anything remaining and keep it gone...
I think I was told they couldn't find the clip-thing that was put in during the first biopsy, also!!! Makes me nervous thinking of some metal thing migrating around my body...! I wonder how common that is???
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the clip is just a tiny peice of metal placed into the skin my theory is that since it was put into my tumor which shrunk from the chemo it was dislodged and more likely to fall out during surgery and also I did have a lot of blood loss I'm happy I had a mammogram to be sure it's still not in there somewhere
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They first forget to mark my biopsied node with a clip and then during surgery it wasn't removed. I know this because it showed on imaging during prep for rads. Hmmm...
My MO did the same thing, feeling my breast and saying the tumor was shrinking. Me, I had some pain in the area, perhaps a nerve was being irritated by the tumor, so I couldn't tell any difference. Post 6th chemo dose I had only two lymph nodes light up, when I had SND there was only scar tissue remaining -- and my axilla was lit up with lots of nodes when I was diagnosed. I don't think anything short of imaging and pathology can give us useful insight.
Congrats to everyone finished with chemo. My naturopathic onc was emphatic that I take CoQ10 for my heart once I was on Herceptin only. He doubled up my dose for a few months after I stopped adjuvant Herceptin also. Targeted therapies and chemo are damaging to the body, extremely depleting. Boosting nutritional intake plus supplement ra under guidance of an integrative med practitioner can help your body dig its way out of tge metabolic ditch it has been thrown into (feelings poetic, can't sleep).
An
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Ann, good to know your naturopath recommended taking CoQ10 because that's what I planned to do after my final tx next Thursday and I'm on H only; that confirms it. Hope you were able to get back to slumberland.
Barbara
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I don't have final pathology, that will be available next week, but I had my lumpectomy and sentinel node biopsy yesterday. I also had an excisional biopsy in the other breast for FEA. I started out with a 1.3 cm tumor at 6;30 position ( inner lower quadrant) in my left breast and an 1.1 cm enlarged lymph node that was positive for mets. After TCHP the tumor and lymph nodes were about 30% smaller and were not palpable. I was so happy when surgeon came to see me post op and told me that they could not find any cancer in the tumor, nor in the lymph node. He removed four extra nodes just to be sure and they were also clean. It was worth the unpleastentness of chemo. I had general anesthesia with a para vertebral block and felt really good once I woke up. Usually it take me hours to recover from General anesthesia, but I was up and using the bathroom and asking for something to drink within a few minutes. I am a little sore this morning, but Tylenol is helping, so no need to take the hydro codons they prescribed.0
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I saw a naturopathic oncologist yesterday and nutritionist very excited to start on the plan they are mailing for me I think it's important I know the chemo killed my cancer since I had a complete response just want to keep it gone for good!
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Creativevintage -- Congrats on the good response to the chemo! And for getting through surgery well.
Stephmoen -- You, too! Great result from the chemo and hope it all stays gone for good!
CoQ10... was taking it just because it's supposed to be good. I guess I'll keep taking it!
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Hi everybody- nice to see this forum!
Just completed round 5 of 6 TCHP on Oct 22.
Neulasta keeps me super sore and achy all weekend into Monday.
Anyone else find that the relentless, burning, disgusting, mouth discomfort is the worst of all the side effects? It has come along sooner each time, this time I could feel it during the taxotere infusion. It lasts longer each time, too. I have tried icing during the taxotere, magic mouthwash, and gelclair. Nothing seems to help much. And my throat is so tight and dry, swallowing is difficult-and kinda gross feeling.
Besides the mouth issues, I take Prilosec daily for my stomach, and then Imodium as needed. My eyes twitch all the time and water a lot. I put aquaphor in my nostrils too. Numbness in fingertips after 4th treatment, very mild though. I am glad I only have one more TCHP left. losing my hair turned out to be the least of my worries! I hear the herceptin only isn't so bad.
The doc always asks if it feels smaller, but it doesn't. I hope I'm wrong. We will find out with more imaging after the last chemo Nov 12. Then surgery, radiation, herceptin, tamoxifen. At this point all of that sounds easier than getting through these treatments!!
Thanks to all of you for sharing, it really helps to know you're not alone, and to have a place to vent for a minute
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hi resilient74,
We are on the same schedule. I just had #5 on the 22nd too. I feel like I have a bad case of the flu from Sat to Mon each time. I don't have the mouth sores. I have a bad taste in my mouth for two weeks after each treatment and my stomach feels 'off' for about 10 days. My fingers are pretty numb to the first knuckle and I have ridges in my nails - I really hope they don't fall off. I am tentatively scheduled for surgery on Dec 15th and then radiation and tamoxifen. I'm counting down until 11/12
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resilient74 and sher0402
I'm about 9 days ahead of you on round 5 of TCHP. I got the "Big D" and deal with immodium regularly, no mouth sores, but the awful taste in my mouth for 10 days, has been a constant. Yes, stuff shows up sooner each time, it seems. I have the tingling, neuropathy in my fingers to first joint, and toes to the ball of my foot. My MO says that since neuropathy came back same as before after this last infusion, after backing my dosage of T & C by 20%, I'll be doing only H & P for last treatment. Then I'm onto surgery, rads, herceptin to finish the year, and then Tamoxifen or AI, depending.... Meeting with surgeon tomorrow afternoon...
I guess I'll know my surgery date then... my countdown to Nov. 2nd has begun. Praying for all of you out here! So thankful for this board!
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I'm so grateful to have this thread to see those ahead of me. I go in for round 3 of TCHP on Thursday. I'm dreading it after feeling so well this past week.
I really struggle with the mouth issues and how disgusting everything tastes. The body aches from the Neulasta are rough as well (and I'm taking the clairitin so I thought it wouldn't be so bad). This past round the D was there, but it wasn't as severe as my first round and I'm thankful for that.
My last chemo is on New Year's Eve so I'm counting down until the end of the year...then surgery, radiation a year of Herceptin and 10 of Tamoxifen or AI.
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It has been interesting to read about your journeys and successes with neoadjuvant therapy. My story is a little different. I started on a course of neoadjuvant therapy in August with only Taxotere and Herceptin. My oncologist planned to have me on Cytoxan and Perjeta as well, but because of other pre-existing medical problems, chose to start slowly. On day 9 of my first cycle, after Taxotere and Herceptin, I was hospitalized with febrile neutropenia for 5 days and had 0 white blood cell count, severe anemia, and acute kidney failure. All has improved and I am almost back to my baseline before treatment. Since then, I have had 2 more Herceptin only treatments and surgery (October), so I have basically abandoned neoadjuvant therapy. Good pathology results after surgery--clear margins and no lymph node involvement and the tumor had not grown since diagnosis (but it also did not shrink after the 3 Herceptin and 1 Taxotere treatment). I will continue on Herceptin for a year, have radiation therapy and hormone therapy, but no more chemo. Wishing you good outcomes with your neoadjuvant therapy!
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I had horrible SEs (diarrhea made me badly dehydrated--as in hospitalization and IV drips dehydrated). But I've had Herceptin alone afterwards and am nearing my year of it (they count the chemo infusions in that year!!! yay!), and have had no problems at all with that!
Food texture was terrible during chemo. I seriously could barely eat and would lose 10lbs each cycle (pretty much survived because I was getting all those constant IV drips for the dehydration). I'd make up the 10 lbs at the end/beginning of each cycle, though, so at least I wasn't worried about wasting away entirely! And I had hope that once the chemo was over, then things would recover. I did get anemic at the end, though. But the food taste/texture came back right away, so I could eat! The diarrhea lasted for months more, but not so bad that I needed IV drips. So hang in there! Once chemo was done I was weak and worn, but I still felt SO much better!!! (Of course, now I've gained all my weight back!!! gah! Need to exercise more!!!)
I was lucky and didn't get aches from the Neulasta or Neupogen... I did take some claritin and other things to help, just in case, though.
My MO told me to take prescription-strength L-glutamine (mixed in water 3x daily) for the mouth sores and I never had them. Ask your MO, though! They all have different ideas.
I didn't have a pCR, although my 3cm tumor did shrink a bit. Maybe 1/3? or less. Still... better than continuing to grow!!!
Neuropathy--I had weakness in my legs, but it started to get better the minute I stopped chemo. One foot is still slightly numb-ish (I injured it because of the weakness, so be careful of that!). But it's getting better. very slowly! I was told by neurologist that alpha-lipoic acid was a possible supplement that might help. And everyone recommends the B-Complex vitamins.
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I stopped chemo at the end of April, so I can barely remember what it was like by now!
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