Day 5 and I don't feel strong enough

Coblndie

I started chemo last Wed. I am Pertuzamab, Herceptin, Carbo, Taxo, once every 3 weeks. I am MISERABLE. I can not eat, I can not sleep, I am hot, I am cold, my whole body aches. I dry heave. I am taking my meds, but I just don't feel like I can handle this. This is neoadjuvent care, so at the end of 6 sessions I'll have surgery. My Pet Scan was clear, my lymph nodes were clear, my BRCA was negative. How do you do it. I have a 7 year old. All I can do is weep and feel miserable. Please help me, and pray for me.

slv58

CobIndie, please call your nurse navigator (if you have that) or your oncologist. Let them know how you are feeling, your meds may need to be adjusted. My oncologist told me that if I was feeling nauseated I should call because that meant she wasn't doing her job! I was on a different chemo than you and I know we all react differently, but please let them know how miserable you are feeling. Make sure you take your meds as prescribed and don't miss any even if you feel better as it is much harder to control the nauseated feeling once it starts- stay ahead of it. Make sure you are drinking lots of water- you need to flush your kidneys. I found plain water very hard to stay down and switched to soda water ( we got a soda stream) which was great for me. I also did neoadjuvent and am so glad I gave it all I could, I am gratefully almost 2 years NED (if you go by dx date)

mary625

Hi, Cobindle.  I too had a very rough 1st chemo.  All different chemo drugs, but same result.  I did call frequently, and they added antinausea drugs on a staggered dosing schedule.  However, it was hard to break the situation once I was in the middle of it.  By day 6-7, it will wear off.  Then I used the drugs for the next chemo and started the first pill the minute I got home.  Getting ahead of it was a big improvement.

You probably got some anti-nausea pre-meds, and a lot of doctors think those are going to be really effective, but for me they didn't seem to be.  They told me to wait for nausea before taking pills--see above that I dropped that after chemo #1.  Specifically, I had compazine and zofran in staggered dosages for about 4 days after chemo, and I didn't stop taking them until I knew I was out of the woods so to speak.  They made me very drowsy.  I also had a daily steroid pill called decadron.  Then they also added Ativan daily.  

Also for chemo #2 and subsequent, I premedicated with ginger with the onc's permission.  I used ginger capsules and put crystallized ginger into tea.  I don't know a specific dosage--I just did the best I could do to get as much as possible.

With the Zofran, I found that I had to take an anti-reflux over the counter drug as it leads to some reflux.  The reflux and feeling of rawness in my esophagus made it difficult to eat.

I found it very difficult to eat.  I didn't have any good ideas about that or any caretakers who had ideas about what to give me.  Looking back, I think I would try more jello, waters or Gatorade with electrolytes, etc., milkshakes, other really soft foods.  Toast and applesauce did not work.  

I hope this helps.

Kicks

Call your Dr!

We are all so different and handle all TX differently.  I did not do your TX plan.  I did 4 DD A/C (Dense Dose Adriamycin/Cytoxan) neoadjuvant.  I had no 'problems living my life.  There were some SEs (lost hair, lost appetite, lost sense of smell and taste) but did not 'slow me down' with anything I wanted to do.  With the 12 weekly Taxol adjuvant,  I existed either on the couch in front of the TV or in bed.  Some will have the exact opposite reaction between the different regiemens.

I was fortunate -- only had '4 legged babies'.   Hubby took over house chores, cooking and dogs/rabbit.  Adult Son took over all barn chores and horse care - so all I had to do was what I wanted to do.  None of what I lived through (operative words 'lived through') 5 yrs ago, is what you are LIVING through now with a major difference - you have a young child to FIGHT to be with.  The times/ problems of 'today' will be a memory in the future.

Some ideas to search out - talk with the Nurse Navigator at your Facility for what is offered through them.  Contact your local American Cancer Society for the programs they have to help you.  Ask your family for help.  If you have. Church, ask there.  There is nothing wrong with seeking the assistance that is available and often from those who have been through and want to give back.

Jaimieh

I had TCH without the P and it kicked my behind. What I did was make sure EMmend was given and then took things one day at a time. The 120 some days felt like forever buy I promise it will eventually end and you WILL feel better again. This time around I had AC and taxol and went in functioning like normal. 

I would second calling your oncologist and let them know how miserable you are feeling. 

jenjenl

The 1st is the worst - it's just a total shock to the system physically and mentally that you just can't prepare for unless you've been there before. I had infusions every 3 weeks and I will say the 1st week was terrible, 2nd was better, 2.5 weeks i would feel great and then bam time for next round. I had a terrible 1st round and it turns out I was dehydrated.  I went and got fluids the day of infusion and the following 3 days.  It made a huge difference and allowed me to recover and care for my kids.  I know how hard it is...my son was 2.5 when I was dx.  In some ways my kids made me be more aggressive but in other ways they made me very emotional with every milestone they met.

Soon you will find the combination that works for you to manage and then you just repeat until you finish.  Here for you from one mom to another. xo

Agent99

hi darling-  hang in there! I had TCH and the first treatment put me on the bathroom floor.  Tell your doctor, my second treatment they gave me emend and it helped me survive treatments 2 and 3better, ( not great but better)   Get help from husband, parents, friends whoever wherever you can get help with your child especially.  Once you get the nausea under control then other side effects will take their place, I also used phenegren suppositories because I couldn't keep the other meds down.  I had a total of 6 treatments and 1 and 5 were the worst. You are tougher than you realize.  You will get through it. But tell your team, so they can help you.

WinningSoFar

My advice is to make sure you are on the best anti-nausea drugs, which I believe are Emend or a patch (Sancuso).  If the nausea is controlled, the other side effects will be far easier to sort out and tolerate, if nothing else can be done.  My own chemo experience was quite easy, that is, until they took away the Emend.  That was simply awful. 

Holeinone

Cobindie, sorry you are sick. I remember telling my sister-in-law, those very words. I could not eat, sleep, became constipated, felt dizzy, faint, nervous, lots of anxiety.  I was very miserable. Mine was every 2 weeks, dose dense, 8 infusions.

It really does suck ! One day at a time was all I concerned myself with. I did not think too far ahead. It was 4 months of feeling weak & trying my hardest to be strong for my kids & hubby. I finished chemo 11 months ago, and then had 33 radiation treatments. Lost 25 lbs, have not gained an ounce back. Food is still an issue. 

Hopefully your MO will give you some meds. I took a low dose of Norco ( hydrocodine with Tylenol. It did help. The Drs. are not keen on prescribing it, but I asked for it. 

ColdInCanada

I fully agree with all the ladies recommending you call your oncologist. I was on TCH without the P, and I remember that first round was a killer. But your MO has a magic bag of meds that can help with everything, so please, please call and let your medical team know what's up. For me, a daily does of Claritin helped a LOT, as did adding Emend to my meds. 

I know it feels like this will never end, but it WILL. I promise. There is Light on the other side, and you will get there. And the Ladies on these boards will help you through it. Sending hugs and prayers your way.

badhairday

Cobindie, I am not the wisest or most experienced person on this board, but I have a son who will be 7 next month. My husband filed for divorce 4 days after my bilateral mastectomy. I have had many moments where I didn't think I would be able to do this, especially as a single mom. I would ask friends for help, my bc support group is an amazing source of strength, as are the friends you have here. Some days, all that kept me going was my son. I would look at him, and even if I didn't know how I was going to do it, I knew I had to, for him. I dug deep, and found strength I didn't know I had. And some days I lived life 10 minutes at a time. I can't offer you sage advice about your specific chemo but I understand how you feel, and I will pray for you. 

Deblc

Cobindle, we have all been there with you! I was not on your regimen but AC kicked my butt. I reiterate what everyone else said about talking to your doctor for meds to mitigate the side effects. No, the se's might not go away completely but some are more manageable than others, and believe it or not, you will get used to dealing with them.  The nausea was the worse for me and my Doc changed my meds three times before I found a combination that worked. As badhairday said... Some days you just have to live 10 minutes at a time.....one minute at time!  And there are good days in between the horrible ones.

It's just too overwhelming to think you will have to suffer months of this so don't anticipate. Just try to deal with what is happening in that moment. Trust me, I wanted to give up many times, and just had to reach a place of acceptance that this is what I had to deal with right now. If I had agonized about the 7 months of chemo/radiation I still had ahead of me,  I would've given up for sure.  I've finished chemo and rads almost three months now, I didn't think I would get through it, but I did....one minute at a time !!!

bride

Cobindle,

I had six months of neoadjuvant chemo with difference meds. And it kicked my butt. I was even in the ICU for awhile. But the first was the worst -- I felt like WWIII was going on in my chest. I'm not sure if my side effects decreased or if I just got better at managing them. I had to celebrate the smallest victories; one day yogurt really didn't taste like soured metal. My MO tried everything to ease my discomfort and nothing worked. There were times when I just wanted to walk away from all of it. Thankfully, I didn't and, in fact, had a 100% response to the chemo. You have the right to get the best medicine available. You also have the right to speak with mental health worker. Mine kept me afloat when I was sure I had sunk. 

This may the most difficult thing you've had to endure. But you can do this! there are all sorts of resources to help you. Please use them and also this group: these are some of the wisest women I've encountered. They are certainly the most giving and care group I know. You are stronger than you believe and with help, you can find positive ways to get through this.

{{{HUGS}}}

CassieCat

I hope you've been able to talk to your MO or other support staff and get some relief.  I am on the same regimen as you.  The first was hard in ways that the others haven't been, and I had a ton of anxiety around it.  I'm four rounds of six into it now, so the end is coming into sight for chemo.  Thinking of you, and hoping you've gotten some relief and that the next round will be easier for you.

randomchance

I find it takes 10 days of miserable to feel better. That being said, I didn't call my doctor soon enough or complain enough about the nausea until my FOURTH miserable TX, got better anti nausea meds and am just dealing with the exhaustion.Ask for and accept help from every one! Even 7 is old enough to help take care of you.

Coblndie

Thank you all! I did go to the ER and found my WBC had sunk to 1.4 I was critically neutropenic. I got put on antibiotics, and got tons of fluid. I'm feeling better now finally except for severe neuropathy and blurred vision. Right in time for infusion 2 in 2 days. ugh.