TCHP - Thinking about quitting

Anonymous

TCHP - Thinking about quitting

LuvAll

Hello pink sisters,

My oncologist put me on TCHP for 4-6 cycles. I had my first of six cycles last week and am already contemplating quitting. Just 3 days after my first cycle is when it started going downhill for me. Severe nausea set in on the 3rd day and on the 4th day severe vomitting (I vomitted 10x on the 4th day). I then got really dehydrated and my daughters took me to the ER to get IV fluids on the 5th day post infusion. Upon being discharged from the ER, I than vomited again on my way to the car.

Days 6 and 7 post infusion and the nausea and vomiting still continues. The oncologist has prescribed zofran (ondanestron) and compazine (prechloroperazine) to mitigate the nausea and vomiting, but im afraid the meds aren’t working. I take them and still feel nauseated and still vomitted just last night.

Obviously with the nausea and vomitting I’m not eating much of anything. Maybe a 1/4 cup of kellogscorn flakes or 2 bites of toast a day. I’m reading others posts and it seems like others have had much easier time than I’ve had on TCHP.

I’ve spoken to my oncologist regarding all the Nausea and vomiting I’m experiencing and his response was that he has already prescribed the best 2 meds for the symptoms im experiencing.

At 74 yrs old i feel this is too much for me. Im contemplating just stopping. This is much more difficult than what I was anticipating.

Thx for reading my post

moth

Hello LuvAll, I'm sorry you're having such a hard time with the nausea and vomiting.

You're nowhere near maxing out the anti nausea protocols. There are way more meds that can be added to the protocols. I will post the link the BC Cancer Agency's treatment guidelines & I suggest you ask your physician if you can take any of the additional medicines. Look on page 2 in the first row - beside HIGH http://www.bccancer.bc.ca/chemotherapy-protocols-s...

You don't have the aprepitant or the steroids. Steroids are quite effective at helping with nausea.

Also you can show your doctor the flow chart on page 5 of the document. It guides physicians on what to try next if things aren't working.

The goal at our cancer agency is NO nausea or vomiting and they take this very seriously.

On top of all the prescription medicine, our agency also tells us we can take Gravol/Dramamine. This is an over the counter nausea medication & it often makes people sleepy which is good because you can sleep through the nausea. Ask your doctor if you can take that.

Now some other suggestions:

make sure you take your medications at scheduled times. Set timers and alarm clocks, take the meds even if you feel fine. Do not wait for the nausea, take all your meds on a schedule.

eat small amounts more frequently. One mouthful is fine, then stop. Another one 15 min later. Toast, crackers etc. Empty stomachs can trigger nausea so try to get something down, even if it's tiny.

take tiny constant sips of fluids. Juices, Ensure, pop, fizzy water, iced tea, anything. Just keep sipping. Keeping things moving down the esophagus can prevent the spasms from turning in reverse.

see if some positions make things better. Is it better lying down or sitting? Is an ice pack on your head soothing and keeps you from getting that clammy queasy feeling? Back rubs? Foot rubs? Keep trying different things.


Hang in there! I hope you find some relief.

hapa

Take your nausea meds before you get nauseous. I cannot stress this enough. Once the nausea sets in it is much more difficult to get rid of. Once you start vomiting, you're screwed.

Are you getting anti-nausea meds before your infusions? And yes, steroids help significantly with nausea, dexamethasone is what most people get. I got 20mg of IV dexamethasone before my infusions in addition to pepcid and some sort of anti-nausea medicine, plus 4mg tablets of dexamethasone to take twice a day for the next two days. Compazine was four tablets a day for two days then as needed after that. I generally skipped the compazine on the two days after chemo because the steriods were so effective. I would start up with the compazine around day 5 or 6, as that is how long it took for the steroids to flush out of my system. On the rare occasion the compazine didn't cut it, I took ativan, but that just knocked me out.

No nausea or vomiting was the goal at my cancer center as well. I really did not have much of a problem with that or diarrhea during chemo.

LuvAll

Thank you Moth for that treatment guideline you posted and all the tips. I read it and ironically none of those regimens are mine. I was told to take the steroid(dexamethasone) only day before and day after chemo. The compazine and zofran prescribed ‘as needed’.

ER doc gave through IV the Reglan and prescribed the Reglan (Metoclopramide). Did an interaction search and found that there is a major rx interaction between Reglan and Compazine. So looks like i have to pick just one med to stick with even though none seem to be working.

That is a relief to know from page 2 and 5 of the attachment that not all that can be done is being done to curtail my side effects. As to why my oncologist doesn't feel the same way...??? To his defense I have only discussed my nausea/vomitting side effects over the phone this last weekend. Looks like I’m due for a sitdown with the MO.

I’ve read that with your second infusion the side effects can be completely different so heres me wishing for a new set of SE gifts for my 2nd treatment lol.

LuvAll

Hi hapa,

Thank you for your comments. So on my first infusion the cocktail included TCHP+ steroids(dexamethasone) + aloxi (antinausea rx) + tylenol + pepcid. Not in that order of course.

I was fine day of and 1-2 days following chemo. Than boom severe nausea. Then vomitting. I’m nauseated as i write this post, and vomited last night.

I did fail to take the anti-nausea meds before the onset. Was just following the drs orders, ‘as needed’. I will most definitely now take the zofran right away after the infusions and not wait for the nausea/vomitting to set in.

Another thing is i was told to take the steroid 1x a day only for the day before chemo and day after chemo and according to Moths attachment and your post, its recommended to take the steroid for several days following chemo. This is a point that I need to take up with the MO.

The Ativan is one i havent tried. I asked the ER doc to prescribe but he replied it was a controlled substance and he didnt feel comfortable prescribing that and to pick that up with the MO. Left me baffled!

The compazine is too strong for my empty stomach right now. I feel it adds to the problem instead of alleviating the nausea. It makes me sleepy and does nothing for my nausea.

I know I’m stuck in a rut. I feel nauseated so i dont eat anyhing. Take the meds on an empty stomach and feel naused.

Sticking woth the zofran for the moment every 12 hrs and taking 1 tab of pepcid daily.Trying to hold down the 1 or 2 bites of food i force myself to eat. Not a good day!

Thank you all for your help.

hapa

Yeah, I had one day of severe nausea during my second round because I wasn't expecting it. I ate breakfast and then I was sick. After that, I just started taking the meds before I ate on day 6 and 7 whether I thought I needed them or not. No more problems after that!

For me, I had the worst side effects the first two infusions. I don't know if I adapted to the meds or if I just learned to manage the SEs better over time, but toward the end it was mostly just fatigue, swelling, and neuropathy that I've had to deal with. None of this is fun but you'll get through it. TCHP is a pretty effective regimen for Her2+ women so I'd stick it out if at all possible. I think it's worth it.

BAZelda

I did TCHP in Jan -April. My first set was like getting hit by a bus. They give you higher (loading)doses of Herceptin and perjeta for the first set. I called the office and told them I was quitting too. I felt better by the 3rd week. Second set I was hit by a VWbug (not really ). Third and on were less disruptive but I survived. First they administered H and P then had Dexamethasone and Zofran before TC. I took oral dexamethasone the next 2 days. Ativan was very helpful for sleep and the Compazine pills worked for my nausea. Zofran did not work for me. I had rashes and diarrhea (perjeta). My left over symptoms now are hand and feet numbness and paresthesias (tingling). I wish I had known to ice hands and feet. There is a very expensive new nausea drug out there. I don't know the name. Tell them you want it. Every step of the way I have wanted to quit. I did get a pathologic complete response (no tumor cells on MRI or pathology report) from this regime. I still get herceptin every 3 weeks through Dec. It gives me hand/muscle cramps and some mild diarrhea. Now I am halfway through radiation and that has given me some nausea this week. Hang in there!!!

BAZelda

I also took omeprazole first thing every morning before eating and then again at bedtime. I took many tums the first few sets too. If you are getting Neulasta to increase white blood cells, take claritan daily for bone pain. I also took Imodium for every loose stool.

lagertha

mI know it's a tough go, but I'm ten years out its back in my sternum but I'll do the FED again if they say I can but won't do another monoclonal antibody it's was hard on my body. Heart edema teeth crumbling . I ve would grandchildren now and for them I'd go to the on and back stay here without them It's so hard when feeling so lousy and it seems that you'll never get to e end but I open you can.💖

WC3

LuvAll:

I'm on much the same treatment as you. TCHP, dexamethasone the day before and after, dexamethasone, benadryl, aloxi and pepcid and tylenol premeds. I don't eat the day before, during, or after the infusion except a little food with the dexamethasone. The dexamethasone raises my blood sugar and I generally don't get hungry. The day after the infusion I take a zofran tablet in the morning and I might take one that evening and the next day but the aloxi seems to control my nausea well.

For one infusion I had IV zofran instead of aloxi but I found it doesn't work as well. I may switch to Emend because the aloxi gives me a bad taste in my mouth that lasts almost the entire cycle. Zofran also gives me a bad taste but just for a few days.

LuvAll

Thanks guys for all your comments.

Hi WC3 thanks for chiming in. Comforting to know your on the same regimen. Same with me here, the Aloxi which was given on the day of the infusion worked. I had no nausea symptoms following chemo for 1-2 days. I've tried the Zofran, Compazine, Reglan and they don't work as well. The Zofran works the best of all 3 for me, but it doesn't eliminate my nausea completely.,

An update: After the ER visit for IV fluids and 3 days out i can say I feel much better. I still have an upset stomach and unable to eat much. I take some pepcid to help and eat very small portions 3-4 times a day. I'm hanging in there and the Zofran (ondansetron) 8mg tab I take every 11 hours even though it was prescribed to take every 12 hours. My nausea isn't eliminated but at least it's MUCH lessened and tolerable. I take half of a Benadryl at nighttime just to help me sleep and mitigate the neulasta bone pain that I was warned would ensue. I know many ladies take the Claritin, but after having taken that for some days after my infusion, I'm thinking maybe that was a culprit in my severe nausea as well. Right now it's much of a dancing game with the meds and foods to see what works and doesn't work with my body..trying to find a balance and hoping the second infusion goes more smoothly.

LuvAll

HI lagertha,

So sorry to hear that your in the fight again. I'm sure your going through a lot right now but be assured I'm here for you, don't hesitate to reach out.

When was your first occurance with BC? What stage/lymph nodes/breast markers? Were you placed on the TCHP regimen as well?

From everything I've been reading the side effects of the antibody (Herceptin/Perjeta) is diarrhea, rash, cardiomyopathy. I'm surprised that you had such a hard time with the antibody...so much so that you prefer to do the FEC Chemotherapy over that...unless I'm misunderstanding you.

I'm wishing you all the best. You kicked Cs butt the first time, I'm sure you can do it again! Sending you lots of hugs.

couragement

Hi LuvAll,

I am just seeing this post and am so sorry to learn of your awful nausea. I also did not respond to the meds they initially gave me, and vomited a lot following my first infusion. They tried everything. The expensive drug that was mentioned above was given to me and it worked one time. It is called Sancuso and is a patch. It is very expensive, but I was able to get it for free from Savon, who sent in something to the manufacturer- so they sent me several patches. You might also check out Phenergan (known also as promethazine). This drug makes you very, very sleepy, but works well for nausea in many people. I developed anticipatory nausea (like my dog when he has to go to the vet, I have to carry him in) and my husband had to drag me in the door to the infusion room ! HA. So they gave me Ativan and it worked a charm for the anticipatory nausea. I also got nauseated from the saline push before they even gave me meds so I would put a candy in my mouth to not get the flavor of whatever they would push. Finally, I do not know if you are in a marijuana friendly state and are comfortable with it, but it became my go- to med for nausea, and for eating. I finally found oatmeal with mashed bananas and ate that for about 9 months and almost nothing else. Hopefully you will find your best food items.

On one other note regarding symptom management, a scientist named Valter Longo at USC has studied fasting during chemotherapy and has found many amazing results. He has found that the chemo does a better job when a person fasts before and after chemo for a day. The study also found that the side effects from chemo were diminished. If you have the capacity to fast that might be helpful for the nausea. If you have an interest you can find interviews with him online in YouTube and also his manuscripts if you search his name.

I am thinking of you with much care and hope and sending love your way!

oxygen18

LuvAll,

The good news is the N/V goes away after chemo, it's very unlikely to linger.

Some people are actually made more nauseous by some antiemetics. So, maybe try to observe whether one of the antiemetics is having opposite effect.

One thing that helped me, and I've never heard anyone recommend it: balance exercises, thuout the day. It can't hurt, as we all need good balance.

Also, when a bout of nausea was coming on, I'd take a really slow and deep breath. It reduced the nausea intensity enough to make it a bit more bearable.

I ended up trashing all nausea meds and premeds, and getting used to tolerating the discomfort because I hate meds that are just for symptom relief. My nurses did not approve, I don't recommend it as standard practice, but am saying that to some extent one can improve one's tolerance of nausea over time.

Also try to sit at a different infusion chair each time, to avoid associating a specific location with the onset of nausea.

I hope you feel better, and I sure hope you continue your treatment and continue to report any symptoms because some types of symptoms may call for a dose adjustment.

Scrafgal

Ask your oncologist about Emend. It got me to finish FAC when zofran and worthless compazine didn't suffice. It is a very expensive drug but you sound like you need it. I could not have made it without Emend!

Hughope1

Hello Hughope1 here,

I probably should of been in this group all along. I am on six rounds of TCHP. Started on Aug 3 first round, knocked me in the dirt, by the following Friday I was dehydrated and potassium had crashed. Going again this Friday. I will write more later.

Jenflorida

Dear LUVALL,

I am about to start Afinitor along with Aromasin.
This is after 2 years on Ibrance and Fasoldex which quit working. I have read of possible side effects from Afinitor and luvall it sounds like you hit the jackpot.

I was first dx breast cancer 2000. Lumpectomy, radiation, tamoxifen. All 20 lymph nodes removed were negative. Thought I had beat the cancer.

In 2014 started having backaches and after various scans dx with breast cancer mets to bones. Started Aridimex for 1 year and then progressed to Ibrance and Fasoldex.

I feel very sorry for the younger women with young children dealing with mets. I am 83 and have lived a long life. If Afinitor causes any of these very unpleasant sounding side effects I will stop. Would prefer to spend rest of my time as symptom free as possible and will use any and all palliative treatments available.

Jen in Florida

LPH

I had this treatment plan last September-December. My onc has me take dexamethasone 8mg twice daily the 2 days prior, got IV steroid day of treatment along with Aloxi and Emend, then dex 4mg twice daily the 2days after. I too had severe n/v and diarrhea after 1st cycle. I was dose reduced to help with the n/v and diarrhea. It did help. Due to the delay factor of aloxi and emend I didn’t get sick until day 7 after chemo. For future cycles would recommend setting up appt for IV fluids and IV Nausea meds at thevinfusion center (If your onc agrees). The morning more dehydrated you become the more nausea you will have. Drink plenty of fluids ginger ale, gatorade, propel water. My onc swears by the motto ‘a calorie in that stays in is a good calorie’ eat whatever tastes good. Try to stay aw

Hughope1

hughope1

made it thru round 2 took almost 13 days to feel normal again. Back again on the 14th for 3 of 6. Hang in there girls.

SoozyCue

I am so relieved to find this discussion. I have been looking around all evening and this is the first one that seems to cover exactly my situation.

I had my first round of the six yesterday. I am told ILC triple positive is very rare, so I don't know if that will make my experience any/much different from most on the same protocol. I am one of those people who hyper prepares for everything, and was amazed tonight to see so little detail about experiences on TCHP everywhere.

I had read a few places that you feel great on chemo day and the day after from the drugs and steroids, start getting tired on day three, start getting sick on day four, being really sick on day five, day six being like day 4, and then constantly feeling better. This afternoon, just about 24 hours later, I started with nausea. I have been keeping it at bay all day with Zofran, weak iced tea, crackers, etc., and sitting in front of a fan because cool really helps me. I'm hoping I'm just getting to the yucky part sooner and will be through it sooner, but also afraid I may have 5-6 sick days instead of 2-3 everyone else seems to have. I have had lifelong digestive issues, so my stomach is already a huge mess, and my PCP and MO are both certain I'm going to require some inpatient stays to get through all six rounds.

Did anyone else start feeling really nauseated on the day after? Did it still run it's course in a few days, or did it last longer? It sounds like only a small percentage vomit to the point of dehydration, etc., is that pretty accurate?

The other thing I am surprised by is that I learned tonight that most people's hair just thins out a lot and it doesn't seem like many women lose all of their hair. I was kind of expecting to be bald by the end of the month, but that isn't how it works, is it? It seems like the hair loss only starts becoming obvious enough to wear something after 3-4 rounds? Or maybe the only people posting pictures and videos had the easiest time of it?

I know it seems like most/all of the women in this conversation so far have just started, but I'd love to read posts from women towards the end of the six rounds outlining what to expect when. Have any of you found things like that?

Best wishes, everyone. I just keep telling myself, "I only have to do this six times," and that somehow makes it less scary. I realize that may change a lot over the next week...

NotVeryBrave

SoozyCue - I hope you are doing better now. It is hard to find all of the information. You might try joining a current chemo thread and/or looking at some past ones.

I never really had bad nausea, but I started taking Compazine twice a day as soon as I finished the steroids. I did have a hard time sometimes with eating or drinking much because almost everything tasted like nothing or yuck. My only hospital stay was for Febrile Neutropenia and never had to get extra fluids infused. Keep an eye on your stomach - I did develop really bad gastritis but medications improved that. The combo of constipation and diarrhea can also add to the nausea.

My experience was feeling tired the day of chemo and the next day and then feeling achy and just kind of sick on days 3,4, and 5. By day 6 I was starting to feel a little better but really didn't feel sort of "normal" until the week before the next infusion. I used to joke that feeling okay meant that it was time to be made to feel like crap again.

As far as hair loss - most of what I've heard is that people lose most of their hair by round two. That was true for me. It started coming out like crazy at about day 18. I had it buzzed super short then and started wearing a wig. Some of it never fell out - maybe 20% stayed? And some of those hairs continued to grow! So I had bald, stubble, and growing all at once. However - the regrowth of all of my hair started before chemo even ended.

Hang in there!

Hughope1

SoozyCue

I am on 6 rounds of TCHP, just finished with #4 last Friday. I started loosing my hair on day 17 after first treatment, then had to shave it all, it was past my waist. Hair became vary unimportant to me, after all the side effects from my first two treatment. But my MO has worked most of these out with me now, hydration is the key.