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Topic: Severe Side Effects with TCHP Chemotherapy

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Apr 18, 2020 12:34PM

GMD57 wrote:

I am undergoing chemotherapy with the following four drugs: TCHP. I am having what I believe to be severe side effects. Is this to be expected? I am having six cycle, 21 days apart. I am now on Day 10 of my second cycle. The second cycle has been worse that the first cycle. Should I expect that with each cycle, these side effects will get worse? Thank you in advance for your help.

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Apr 18, 2020 12:47PM MinusTwo wrote:

GMD - in my experience - yes, it gets worse before it gets better. But it depends on the side effects. Fatigue continues to get worse. If your white blood cells go down, ask about neulasta. I had an injection 24 hours after each infusion. You shouldn't have nausea - that's controllable. Talk to your MO. I had lots of diarrhea. Yes, I got meds & they helped, but I still requested an extra bag of saline infused between each of the 3 week cycles so I wouldn't get dehydrated. You can get mouth sores, but I mostly missed that one.

Are you icing to help from losing your nails? I used frozen peas on my fingernails and didn't lose any. You're about to the stage where I lost my hair. Rather than shave my head, I got a buzz cut.

I would suggest you join one of the chemo groups for those in treatment right now. It helped me so much to share the journey, the side effects and the solutions. There should be one for March & for April - something like "chemo in March"

I'm pretty sure this is the link with chemo tips below.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 18, 2020 12:48PM MinusTwo wrote:

Here's the April chemo journey thread

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Apr 18, 2020 12:58PM HeartShapedBox wrote:

GMD what are you experiencing that you think is severe?

I also had a very hard time on TCHP, so "normal" can include a loooong list of pretty hellish symptoms, but an "allergic" type one (trouble breathing, rash) or fever of 101.4 or above is one you definitely want to tell someone about ASAP.

I was absolutely miserable for 11 days of each cycle (severe diarrhea and terrible grinding stomach pain, every mucous membrane tender and bloody, a woozy drugged feeling, extreme fatigue, dry skin, dry mouth and altered taste buds... On and on), felt a little better the next few days, and (at the beginning anyway) had a few "good" days at the end of my 21 day cycle. As the cycles went on it was harder to recover and my "good" days were spent on the couch with anemia and severe stomach pain.

Diagnosed at age 43. Triple + luminal B regional spread to lymph nodes, pathological TNM stage llB after 6 sessions neoadjuvant TCHP (dropped perjeta after 4 doses), initial clinical stage lllA Dx 5/24/2019, IDC, Left, 5cm, Stage IIIA, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 8/1/2019 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 8/1/2019 Perjeta (pertuzumab) Targeted Therapy 8/1/2019 Herceptin (trastuzumab) Dx 12/27/2019, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 2/8 nodes, ER+/PR+, HER2+ (IHC) Surgery 12/27/2019 Lymph node removal: Underarm/Axillary; Mastectomy: Left Radiation Therapy 3/4/2020 Whole-breast: Lymph nodes, Chest wall
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May 8, 2020 06:49PM GMD57 wrote:

Thank you for your response. Now I know I'm not alone. I've had 3 rounds of chemo now. Today is the 8th day after the third chemo. My side effect have been very similar to what you described. It is really awful. In addition to the side effects that you mentioned, I also have extreme weakness in my legs. It's difficult for me to stand or walk for very long. I had a meltdown (lots of crying) two days ago and called the doctor's office for advice. I spoke to the Medical Assistant who spoke to the doctor for me. The doctor said that she might consider reducing my dosage and/or delaying my next chemo for one to two weeks. She is going to discuss it with me at my next appointment on May 15th. I'm worried that if my dosage is reduced and/or my chemo delayed, it will have a detrimental effect on my prognosis.

I have the following questions:

1. Did you experience muscle weakness in your legs? If so, did your leg muscles return to normal when all the chemo was over?

2. Did your doctor decide to reduce your dosage or delay your chemo due to your severe side effects?

3. Another issue I have is that I've lost 10 lb. since my chemo started and I'm only halfway through the chemo. I was already at a healthy weight when I started chemo (125 lb. and I'm 5 feet four inches tall). So, I've lost 8% of my body weight. I was wondering i it would be reasonable to reduce my dosage by the same percentage of my body weight. Did you lose much weight during chemo and did your doctor reduce your dosage simply based on your weight loss?

Thanks for your help!

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May 8, 2020 08:01PM fishingal68 wrote:


I am so sorry to hear that you are having such a terrible time on TCHP. I, too, had those same issues. My oncologist assured me that those of us who experience horrible side effects have the best outcome. (I hope he was telling me the truth!)

I had major leg weakness along with hip/joint pain during chemo. Sometimes it was an agonizing ache, and sometimes it was muscle spasms. Sometimes it was both at the same time. Although this has subsided, there are times when this comes back to haunt me. There were times I could only walk a few steps at a time, and I had to have someone hold me up in case I couldn't make the next step.

I had chemo delayed 2 times; both were due to hospitalizations. My WBCs dropped to a dangerous level, and I did have the neulasta injector each of my 5 chemos. I was scheduled for 6, but I ended up with CHF and we had to pull it.

I lost weight on chemo, but I did gain it all back. As long as your team is monitoring your progress, that part should be ok. I encourage you to call their oncologist-on-call any time you have a question/concern. They are usually good about responding ASAP.

Another suggestion is to have them run your next herceptin slowly. It made a difference for me when I had chest pain. I'm not going to lie. Chemo was hard! However, you are 1/2 way there, and you're going to make it to the finish line! Please reach out if you need a pep talk. Many of us have been where you are now, and we remember how difficult some of those days were.

Sending hugs and prayers!

Dx 9/7/2017, DCIS/IDC/IDC: Cribriform, Right, 2cm, Stage IIB, Grade 3, 1/3 nodes, ER-/PR-, HER2+ Targeted Therapy 10/9/2017 Herceptin (trastuzumab) Chemotherapy 10/9/2017 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 2/16/2018 Mastectomy; Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Radiation Therapy 5/14/2018 Whole-breast: Breast, Lymph nodes, Chest wall
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May 8, 2020 11:45PM Jettie wrote:


the side affects are definitely cumulative but from my perspective my body seems to have got somewhat used to them, the fatigue is evil, so i only do a little at a time.

My 1st infusion was tchp, they stopped the perjecta due to chemo rash

My 2nd and 3rd was tch only,

My 4th will be thp - there taking the carbo out as i still have a mild rash and other side effects so there putting the perjecta back in, so am expecting an increase in some of my other side effects

who knows what my 5th and 6th will be lol

The fatigue, stomach pains, the joint aches... the running to the bathroom not knowing if your gonna make it and if you do, if your butt is gonna turn into a lava flow or if your gonna hurl instead or both ( that's always fun) :( But I look at it this way, there has been significant changes is how my breast feels compared to pre chemo and there is only 3 more infusions left.

So there are options, personally i would prefer not to delay as I just want to get it over and done with and start feeling somewhat normal again, which i am far from atm.

sending you lots of hugs and good vibes :D

Dx 2/14/2020, IDC, Right, 5cm, Stage IIIB, Grade 2, ER+/PR+, HER2+ (IHC) Chemotherapy 3/11/2020 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 3/11/2020 Herceptin (trastuzumab) Targeted Therapy 3/11/2020 Perjeta (pertuzumab) Surgery 8/11/2020 Lymph node removal: Right; Mastectomy: Right Radiation Therapy Whole-breast: Breast
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May 9, 2020 12:36PM - edited May 12, 2020 08:05AM by SpecialK

My first infusion gave me pretty severe side effects, but numbers #2 and#3 not so bad. I think my first chemo side effects were more intense because the first was loading doses, and the subsequent infusions were lower doses, but I had some side effects that were also cumulative. That said, I still had 10 days of the Big D and mouth tenderness, loss of taste, fatigue, etc., with each infusion, except the final one. Infusion #4 and #5 were worse than the previous two, but by some miracle #6 was a breeze, never even had any GI issues. I struggled with eating the first 10 days, then would ingest as much protein as I could, even if I couldn't taste it, the next 10 days before the next infusion to try to keep my hemoglobin up. If you are experiencing muscle fatigue it may be due to low RBC and hemoglobin. Keep an eye on this as some people become symptomatic and need a blood transfusion even if their hemoglobin is above 8, which is the usual cutoff. Look out for shortness of breath, lethargy (beyond fatigue), dizziness, or disorientation, and let your oncologist know about any of that asap. Try to get as much protein as you can - I ate red meat (tasted like cardboard) and Greek yogurt, scrambled eggs, and fortified cereal - this is in an attempt to help boost your RBC and hemoglobin. I never required any delay or dose reduction, but know that it is common. Do you gain back any weight each cycle? I lost and re-gained, and ended up post-chemo with a net gain. The chemo you receive is calculated by BSA (Body Surface Area) each time you get an infusion which is a computation of height/weight, and the primary reason you are weighed at each appointment. This means you get an appropriate dose based on your new calculated number - if you weigh less you are already getting a dose reduction, but does not preclude an additional percentage reduction of dose if your onc feels it is necessary to remediate any severe side effects. If you look at the websites for all the drugs you receive you will see the dose is not a set number for everyone, but rather so many mg (of drug) per kg (of weight) - this is determined by the BSA calculation.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, DCIS, Stage 0, Grade 3 Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC)
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May 12, 2020 07:57AM claireinaz wrote:

Hi, weight loss, fatigue, joint pain, (I had hypersensitive smell and depending on what I was smelling would make me nauseous), all are normal. I lost about 15 lbs, and I was already normal weight. I got Neulasta, and made sure I took a Claritin 24 hour so that I wouldn't have bone pain from it-which can happen.

A word about icing nails and toes-it needs to be done when you get Taxol or one of the taxanes. If you aren't getting it yet, you don't need to worry about it.

Hang in there- this will pass, and you'll come out the other side and find out you'll be okay in the end.

Claire in AZ

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 12, 2020 08:40AM santabarbarian wrote:

Take a look at fasting or "fasting mimicking," I fasted prior to chemo and it made the GI issues much better.

pCR after neoadjuvant chemo w/ integrative practices; Proton rads. Dx 7/13/2018, IDC, Left, 3cm, Stage IIB, Grade 3, ER-/PR-, HER2- (FISH) Chemotherapy 8/12/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 12/27/2018 Lumpectomy: Left Radiation Therapy 2/10/2019 Whole-breast: Breast, Lymph nodes
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Jul 3, 2020 07:43PM Bluebonnetmama wrote:

Hi ladies. I also did a fasting diet with my 2nd and following chemos. I drank beef or chicken bone broth 2 days prior to chemo and then the day of chemo. 3 days total. I also drank water and green tea. Every time I started feeling hungry, I drank a cup of broth and tea. It helped quite a bit, although not symptom free by any means.

Hope someone can be helped with these ideas!


Bluebonnetmama Dx 11/4/2019, ILC, Right, 3cm, Stage IIIA, Grade 2, 5/11 nodes, ER+/PR+, HER2- Surgery 12/4/2019 Lymph node removal: Underarm/Axillary; Mastectomy: Right Chemotherapy 1/15/2020 TAC

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