Neoadjuvant TCHP - Post Results Here
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Proud_patriot: Sorry I do not have answers for your question as my wife just had the 4th infusion today, but I always have confusions regarding why US shows so different size from that in MRI (for my wife's case before the TCHP, it was the opposite: MRI showed larger size)... Also, did your MO do physical examination after each cycles? if yes, did s/he still feel the tumor, especially after the last cycle?
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NotVeryBrave: Thanks so much for giving us an idea for scheduling upcoming surgery and treatments. I did contact the BS yesterday and he suggested us to have the MRI a week after the last infusion and 2 more weeks later for the surgery. He was assuming we are going to do the lumpectomy and Sentinel Node Biopsy.
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I haven't had a follow up US, just an MRI, which they thought no longer showed the tumor until I pointed it out. The surgeon conceded that we really won't know what is left until it's biopsied during the surgery. But in any case it appears to be responding. The question is, are any micriomets elsewhere responding and does this response increase my overall long term survival? There is debate about that and only time will tell. I don't think I am going to ever accept I am cancer free until I am old and on my death bed dying of something else.
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I agree with WC3 - you really won't know until after surgery whether the chemo got it all.
WC3 - you are right. Micromets can always escape. We can't claim to be cured. Only NED - no evidence of disease.
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MinusTwo: NED is usually claimed by which doctor? BS,MO or RO? based on what test?
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LillyCh-My MO did a physical exam before each cycle and the lump could not be felt after the 2nd treatment.
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Proud_Patriot: Then that is a little bit unusual as I am under an impression that MRI is the one (not US) which tends to overestimate. Your case sounds like a very possible PCR, you may not need to worry about the US results at all (I know there are still about 3 weeks waiting). Please keep us posted after the surgery.
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Proud Patriot,
That happened to me as well. The radiatiology fellow who did my final ultrasound and mammogram told me he didn't see much of a change in my breast tumors as well as my sentinel node after chemo. I was devastated. I had ten tumors and lymph node involvement. I switched my care to MSK and before surgery my new surgeon told me he was confident i had a complete response just by doing a clinical exam. He performed my surgery and was right! Complete response!
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Lily - The MO is usually the driver of the bus who coordinates all the treatment and reviews all testing & surgery & RO reports. My MO is the one I continue to see - first every 3 months, then every 6 months and finally every year.
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MinusTwo: Really?
The first doctor we saw is BS, so I thought he would be the one who coordinates the treatments and reviews. Shall we discuss this with the MO next time when we see her? :-)0 -
Yes I would. I insisted on meeting the MO before I committed to anything else. He is the one that took my test results to the tumor boards to determine final recommendations for treatment. Granted, my BS sat on those boards and they coordinated my care, but he was the driver. He is the one who recommended rads after surgery since I didn't have a pCR with chemo - even though surgery did get clean margins. The BS is a surgeon, as is the PS. Once the surgery is done and post surgical visits completed, both generally bow out. The MO usually stays on board monitoring everything until it's far enough down the road to move to your PCP - five years in my case since I was ER/PR negative but HER2+.
As an aside, I LOVED my BS and she would see me anytime I called. But again, she's a surgeon.
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MinusTwo: That makes sense. Thx much.
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It may depend on your team. My MO is ok, but some of the other doctors seem more active/aggressive in their outlook. At the tumor board, it seemed to be his department head who pushed for the TCHP which he hadn't mentioned after my biopsy results came back. He only spoke about surgery, Herceptin and possibly radiation.
Since I'm a multiple time patient, I tend to work with all of them.
The radiation oncologist for example is working with me to set up MRI screening once a year rotating with mammogram, which the MO wasn't into. I'd rather get earlier warning if anything pops up again, and MRI and mammogram seem to have a little different results.
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raleighgirl-The MRI showed no evidence of a tumor while the US/Mammogram showed a residual tumor of 1.7/1.1 cm (compared to 2.7/2.5 at the outset. There was definitely a response to the chemo. However, I am surprised to see a residual tumor on the US/mammogram but nothing on the MRI.
I also thought the MRI was supposed to be more sensitive.
When the surgeon saw the results she said that pathology would have the last laugh.
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My understanding is that sometimes the area where the tumor was can leave a shadow or scarred area. Tumors can also kind of disintegrate in a "Swiss cheese" way.
Yes - pathology wins!
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Are there any ways or medications to deal with fatigue? 4th day into the 4th infusion, it is simply too severe for my wife
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Lilly - I got decadron (steroids) to take morning & night the day before, the day of and the day after chemo. Of course those rev your system up & you can do "anything". A friend who went through lung cancer said do not take two decadrons the day after - the fatigue drop off is unbelievable. He said take 1 on day 3 and 1 on day four to avoid the precipitous drop. My MO said OK and it worked well for me. Other than that, I scheduled chemo on Wednesdays. I felt pretty good on Thursdays and OK on Fridays and then I simply crashed for the entire weekend.
I expect there are meds to keep people awake, but fatigue is a universal side effect. Best thing is to plan nothing for day 4 & just sleep - even 24 hours if that helps. That said, I can't remember - but I don't think you have young children at home, so sleeping to let the body heal is good.
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Thanks a lot, MinusTwo.
Oh, that dex thing
. MO instructed to take one the night before, two on and after the infusion. We may ask the MO to make a similar change on the 5th infusion. Thanks again.That is correct. Thursday was the infusion day, Friday was OK but Saturday and Sunday were very bad...
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Hope you will both just cancel any weekend activity on infusion weeks and let your DW lie in bed w/a book or recline in front of the 'boob tube' (just realized the funny symbolism in that old phrase) while she dozes in & out. Maybe wake up long enough to keep drinking fluids or eat soup.
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The fatigue and other effects tend to be cumulative, after the 3rd treatment I just wound up planning that I'd need to take off work for 3-5 days once the effects kicked in.
My treatments were on Thursdays with fluids on Friday and Monday. By Sunday/Monday, I was pretty out of it for a few days between fatigue, shortness of breath, severe anemia, and other things. It was a lot toward the end just to walk 20-30 feet without stopping. On the brighter side, the nausea subsided some for the second half of treatment.
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Thanks a lot, MinusTwo and misslil.
So far my wife only had fluids two times (during the one-week checkups after the 2nd and 3rd infusion), should we ask for more fluids (for fatigues and other SEs)?
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I did go in for a full bag of saline between every chemo treatment. I got some kick back because: a) it wasn't standard procedure; b) it took up an infusion chair; c) the saline shortage had started even well before Maria. But my MO pushed it thorough because I was usually dehydrated, probably due to the big "D" that i could never stop, and the blood numbers. It made me feel so much better. Note: better is a relative term until at least a month after the final chemo treatment - but at least made me feel like I could make it until the next infusion.
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As far as the fluids, it seems to vary.
It was standard at my clinic for TCHP which they considered "the worst" of their chemo regimes. Due to the long duration of the treatments, and the multiple harsh drugs.
I never did, but my MO and the clinic nurses would always tell me to come back if I needed more fluids in between the regular routine. The main "extra" I wound up doing was two blood transfusions after my blood tests showed severe/worsening anemia.
At one point they also gave me extra potassium. I should have taken the pills, not the powder mixed in applesauce -- very nasty
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LilyCh I had to really taper off the dexamethasone which I learned the hard way. Going off too quickly led to a terrible emotional crash as well as a physical one. It might be worth a try. As others have said the fatigue is a part of the process and does tend to get worse with each cycle. But she’s four in so just two to go? I had extra fluids once but it was due to dehydration after a migraine. They did help me feel better
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CassieCat, thanks very much!
Yes, we are in the 4th now and tomorrow will be visiting MO for the regular checkup one week after the infusion. We did go there yesterday as well for a bag of fluids and some anti-nausea medications (I am terrible in remembering the names). Not sure which one made the difference, but It did help a lot and my wife felt a lot better right after
. For the remaining two infusions, we probably will go for this approach for having a bag of fluids during the middle of first week. Thanks again.
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Hi. This is my first post, so I’m not really sure if I’m doing this correctly. I am Her2 positive and begin neoadjuvantTCH on Thursday. Does anyone who has been on this have any suggestions or tips?
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Lookup - sorry you have to join us, but welcome. Every page of this thread will have some great tips. If you have side effects, don't let them rush the infusions. Slower is easier. Buy some light day panty liners, since you'll likely have some 'big D'. Also I'd suggest you join the current chemo thread. It's usually titled something like "chemo September 2018". It was much easier for me to share with people going through chemo at the same time.
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Proper acid reflux control is important. If they give you Prilosec or some type of PPI for acid reflux, it takes a few days to start working so I start it five days before I start the dexamethasone/decadron because the dexamethasone/ decadron itself will give me acid reflux.
The dexamethasone/decadron withdrawal may make your throat/ esophagus tender for a few days. I find cold soup helpful during this time.
They will give you some type of anti nausea medication in your IV the day of your infusion. Two common ones are Aloxi and Zofran. They can cause taste changes, particularly to water, that you might find unpleasant. Aloxi caused me more prominant and longer lasting taste changes than the Zofran. You can determine they cause taste changes for you by taking a drink of water right before they administer them and about a minute after they administer them and seeing if you note a difference in taste. Aloxi worked the best for my nausea but I could not tolerate the taste changes from it and they would last most of my cycle. Water was particularly bad and I could only drink lime flavored La Croix. My anti nausea pre meds were switched to IV Zofran and IV Emend. This greatly reduced the strength and duration of the taste changes to just a few days and made things much more pleasant despite a little more nausea. The taxotere and carboplatin also cause taste changes but for me this is a 3 to 4 day thing that happens mid cycle.
Generally though I have found carbonated water more tolerable than non carbonated water.
What you can't eat at one point in your cycle, you might be able to eat at another point in your cycle. I can't eat acidic things the first week but I can tolerate them after day 9 if I have no mouth sores/irritation and in fact they are the foods that still taste good to me when the taste alteration due to the chemo is at it's peak.
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Below is a link to a wonderful thread with tips about getting through chemo. Remember - we all react differently. You will not likely have all of the SEs discussed. For example - I never had acid reflux. But I did take a regular Claritin starting the day of chemo & for a week afterwards to ease the bone & joint aches - particularly from the Neulasta shot the day after but probably from Herceptin also.
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minustwo,
Well said!! “No evidence of disease” is more appropriate than “cancer free.”
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