Chemotherapy symptoms, combined carboplatin/paclitaxel

smm70

I was diagnosed in 2015 with Stage iv high grade serous ovarian cancer.  I went on a dose dense weekly chemo protocol, had debulking surgery, then 2 more cycles of chemo.  I was pleasantly surprised that I had no major adverse reactions to chemo, and had 2 1/2 years of remission before recurrence. A week ago I had my first chemo session with large dose of paclitaxel and carboplatin (GOOVCTR) to be administered every 3 weeks.  The side effects of this protocol are far more serious, because of the joint and nerve pain I am still experiencing a week after the treatment.  It feels like I am walking on pins and needles.  I am concerned that the nerve damage could possibly be permanent after 6 rounds on this chemo.  Has anyone experienced this, and if so, how are you doing after treatment?  The fatigue and slight nausea I can handle, but nerve pain not so much.  Any information would be appreciated

smm70

I should have read the dialogue on neuropathy before posting my request, but I am new at this, and I now know that a lot of people are experiencing it.  This OVdialogue is going to be very helpful to me.

midcanada

[email protected],
There is a lot of useful information here, but never hesitate to ask questions at any time.

I had neuropathy combined with hand and foot syndrome with my last round of Carboplatin /Paclitaxel. We switched to Docetaxel and reduced the dosage.   
I found much of the neuropathy  and nail issues disappeared after a 8 week chemo break following an allergic reaction to the Carboplatin. 
 I am now back on Cisplatin with Docetaxel and I have an increase in neuropathy and nail pain already after 1 cycle.  Will see how it goes for the next two cycles before I am reassessed as to the effectiveness of this regime on my disease. It might just be a side effect I have to tolerate.

smm70

Thank you, @midcanada, I will be discussing the issue with my oncologist again to see if there are other options.

Flowergirl

Welcome @smm70 - yes, that is best to advise your DR team of your concerns and the neuropathy as they will be looking out for you. 

Elsie13

@smm70, I also had the CARBOPLATIN/PACLITAXEL , 6 treatments, 3 weeks apart.  This was at the beginning of 2017. While the IV was in, I had extremely annoying restless legs, so sometimes I could not stay in the chair, I had to stand and stretch.  Apparently though, that was due to the steroid pre-med. Bone joint pain?  I had a bit of that and I just took the acetaminophen that had been prescribed. By the time I got to session, 4, 5 and 6, I was extremely exhausted around day 4, 5 after treatment. The tingly feet didn't really start until 2 weeks after chemo was all finished. It got a bit worse over 3 months, and has stayed at the same level now for a year.  The doc said it might last 2 years. 
  I have a sort of 'funny story,' but I'll see if I can post it in the neuropathy section. 

nell1261

I was diagnosed last August, had surgery in September the surgeon said stage 2, the oncologist said stage 3, started chemo in November..6rounds 3wks apart on paclitaxel/carboplatin. The first round after experiencing restless legs from the premeds would last about4hrs..it was more annoying than anything else...then I had a reaction to the paclitaxel, so I had increased doses of premeds each time after... I got bone aches in my legs about 2days later that lasted about 4days, I found walking helped ease the pain. other than that just the usual tiredness and hair loss which I didn’t care about, it has grown back in. 

Flowergirl

Hello @nell1261 - welcome to the chat site. Thank you for sharing your update. Are you now finished the chemo and how are you feeling?
You are welcome to post your story on your bio page if you like as well.
We try to meet by live chat on Tuesdays at 7:00 PMCST if you are around to join us. 
I'll also direct message you. 

Scarstef

Hi, my name is stef. My sister has just been diagnosed with high grade serous ovarian cancer. I am really worried

Scarstef

She is stage 3a. She had a hystectomy on July 10... First chemo was on Aug 8. She is super weak. Anyone that can shed some light or their experience would be so nice

Flowergirl

Hello @Scarstef - we are sorry to hear about your sister's recent diagnosis. Hope you will find much support here.

There are 4 pages of topics so you may want to take some time to view the past posts to see the experiences/comments  the chat participants have shared. There are also previously recorded webinars on the main site which I have found most helpful. You can find one here on coping with treatment / side effects:
https://www.youtube.com/watch?v=ijPQdwjs0V4
I'll also private message you.

Scarstef

Thanks so much flower girl. My sister is going through alot bc of chemo.  Constipated, depressed, nausea.  It's just frightening.  I'm so scared 

Flowergirl

Hello again @Scarstef.. hoping for her that the side effects will lessen soon... the DR team can offer her some solutions to cope. And yes, it is important for her and you to get some support for the emotional effects too.

retti25

Hi I just had my first chemo on August 7th and it took about 1 week and half for the joint pain to be bareable and I have had all different other side effects.  Is there anything you can recommend like supplements or medications that would help with pain management... thank you 😊 

Nancy1

Hi my name is Nancy.....I was first diagnosed back in Nov 2004 at the age of 43...had surgery and 6 rounds of carbo/taxil.  First recurrence happened 2012.  Had a second surgeryearly 2013.  Next recurrence late 2013....had 51/2 rounds of carbo/taxil again through 2014 but could not complete the last round in the hospital due to severe reaction.  Next recurrence late 2015.  Started Kalex end of Mar 2016 for 3 rounds but had such as severe reaction could not take anymore.  Switched to Doxirubin for 6 rounds then drug stopped working.  Had a break until May 2017 then did cisplatin/Paxil for 6 rounds in the hospital.......had the pain and completely numb feet and hand and pins and needles.  Happy to say that the majority of the neuropathy cleared up after about 6 months.   I have just started Lynparza Aug 2018 and I’m BRCA negative.

Flowergirl

Hello @Nancy1 - welcome to the chat site. Thank you so much for sharing all the issues you have dealt with so far... good to hear they are looking after you. It is great to hear that the neuropathy has also changed for you.
We invite you to review the past topics on the site and hope you will find much support from everyone.
I'll also direct connect with you.

CurlyHair

@Nancy1 You have incredible perseverance and determination.  Thank you for telling your story.  Good luck. 

blair_ns

Hello Nancy1.  I am sending good energy your way. You have a lot of courage and determination. Keep in touch.

JanCan

Hi, I am going for 2nd chemo carbo/paclitaxel next week. The fist cycle was rough for the first ten days with nausea not too much vomiting, and leg pain that was quite bad. The third week has been recovery phase just in time for round two. Does anyone have tips for best pain control for the legs... I have taken extra strength tylenol x 2 and it doesn't help much... I have an ileostomy too which had very high output for a few days aka diarrhea. Stage 3c surgery November lots of complications and 25 day hospital stay. I am encouraged by the stories of others who have survived 5+ years. I am 61.

Flowergirl

Hi @JanCan - hope this week finds you doing better. For sure mention to the DR team about the leg pain so that you can be comfortable. The arthritic type /ache pain seems to be a common side effect and hope you can find what works for you... 

Elsie13

Hello @JanCan.  I had CARBOPLATIN/PACLITAXEL  as well, 6 cycles, 3 weeks apart. The worst thing was the restless legs during chemo.  For leg pain, I took the Tylenol as soon as I felt it, even although it was only a slight pain, and that strategy worked fairly well.  Same with nausea - I took the prescribed pills even although I only felt very slightly nauseous. 
      During my fourth chemo, I developed a rash on my neck, throat and upper chest, so they stopped my chemo for a half hour ? an hour? while consulting the doctor. I was given additional pre-meds, something I had already been given, but more of it, and the chemo was started again, but given more slowly. So we were there for 7 hours that day, instead of five and a half to six hours. 
         So for my next two chemos, I had to take a bunch of pills at 3:00 AM, ahead of the chemo.  The rash wasn't itchy.  It was the nurse who noticed it.
   How are things now, JanCan?

Flowergirl

Hello @Elsie13 and @JanCan... yes it is a tricky combo and it may take some time to figure out how to cope with the side effects. One of the nurses mentioned to avoid caffeine on that day to help lessen the restless legs; certainly tried it and it seemed to help. 
Days post chemo,  sometimes the rash shows up or welt like bumps (hello acne again)
as always - check in with your team about anything new or bothersome so they can assist in the management of those side effects. 

RobinD

@JanCan I'm just having my first chemo and the leg pain is really bad. Did you find something that worked? Tylenol did nothing to help.

kastoyles

@RobinD I took Tylenol, max dose, heating pads and occasionally Tiger Balm. - check with the pharmacist as to which cream you can use with your chemo.

Fearless_Moderator

Hi @RobinD Welcome to OVdialogue and sorry to hear you've just started chemo.  If it helps, most of us experienced various forms of pain over the course of chemo. Some leg pain, some foot pain, some joint and muscle pain...among a raft of other side effects of the drugs. Each one of different in response though so there is no miracle solution to offer. What I can assure you is that good communication between you and your medical support team...your oncologist and the chemo nurses....is critical to making the experience as comfortable as is possible. As long as they know how you're feeling and reacting to the treatment, they have a range of options to make things better. Those could include anything from suggesting OTC meds (I always used to mix one Advil with 2 Tylenol ...approved by my oncologst) to mitigate pain, to adding or increasing medications provided during treatment to control side effects to changing the flow of the chemo drugs into your system to even changing the drugs to something more tolerable.

Don't be discouraged after one treatment. Over the next few, with good communication in the chemo room and your follow ups with your oncologist, things should get adjusted to make it easier for you.  

If you haven't already ordered it, I recommend By Your Side which you can order soft copy from Ovarian Cancer Canada. It's very helpful in guiding you through your treatment.  https://ovariancanada.org/Living-with-Ovarian-Cancer/Support-resources

Keep us posted on how you're doing and please continue to reach out as needed. We're all here for you.

RobinD

Thanks I have By Your Side. The leg pain finally went away after day 5, I have some numbness in my fingers and one night of restless leg, but nothing like that leg pain...I felt as though all of the strength had been sapped from my legs, but it did come back and I am able to go for short walks now. I feel that now, I at least know what to expect, and can manage it. It's hard the first time when it's all new and you have no idea how long the pain will last

Fearless_Moderator

@RobinD I'm so glad to hear the side effects diminished and you're feeling more comfortable now. I know what you mean about expectations. It's not even new for me....a recurrence treatment but four years since I've been in chemo and that first one the other day hit me like a load of bricks.  I must say I thought it would never end and wondering if this is what I have to expect each time for the next few months...UGH. But one thing I did learn was to be patient. Make sure my oncology team were aware of how I was feeling and between any adjustments they might want to make to my treatment and me, just letting nature take it's course and hope things would be better it does work out eventually.  Hang in gal. You're over the hump on that first one.  

CountryLiving

@RobinD sorry to hear about your leg pain but glad to hear it is better. I suffered from severe pain in my legs from day 3 of chemo. I was told to only take Tylenol, and told to not take any advil or motrin as that has side effects during chemo. Please check with your team and they will advise. My pain felt like I had been hit by a truck.. heat and tylenol helped a bit. It did subside as time went on. Sounds like you are dealing with everything very well considering all that your body is going through. Yes the first chemo is always the worse because you dont know what is going to happen and cant be prepared. Next time perhaps take the tylenol or whatever is prescribed by medical team prior to the pain on the day prior to what day it occurred this round. Hope each day you are feeling better. 

La17

@RobinD Thank you for bravely sharing your experience.  I had the pain in my thigh and hip around Days 4 - 6, and Tylenol with heat helped a little.  However, by my third cycle, at the prescription of my medical team, I started to take Tylenol Arthritis the evening before on Day 3, and as I result I barely had any registered discomfort in that area at all.  It helped so much, since those are also the days I feel incredibly depleted, so the absence of that pain was a welcome relief. 

Thanks for these posts - I wasn’t “ready” to process and share in this way, but am so uplifted  to read everyone helping, supporting, and empathizing. So grateful.

Elsie13

@La17, Glad to see you are posting here! 
When I was having chemo, 4 years ago, I had the most annoying restless leg syndrome during chemo, especially during the second hour.  So I would get out of the big chair, and just stand there, tightening my leg muscles. One or two of the nurses were a little worried, thinking my IV could come loose or something, but everything was fine. 

(Well, at a certain point, I started visiting the washroom every 30 or 25 minutes, which of course, involves getting out of that big chair!) 

dolphingirl

The doctor put me on a combination of CARBOPLATIN/PACLITAXEL , 6 treatments, 3 weeks apart.  Well 10 minutes into my very first treatment I got this heaviness in my chest and pain up my spine.  The nurse immediately stopped the IV as I was having trouble breathing and was throwing up despite the pre-meds.  She spoke to the doctor and after more meds and a bit of a break they started the drip again.  Again I had trouble breathing and my pulse ox was down to 88 and they started O2 by mask.  More antihistamine meds and they started the Paclitaxel again and this time I was able to finish.  But within 12 hours I started to notice a rash.  Just on my arm that had the IV at first but then this angry red rash covered both arms and legs and I spent the day in the ER.  Nobody could tell me what this was.  They weren't sure if it was from my chemo or the Covid shot that I had just had or both things together.  I was sent home with high dose antihistamines, but by the afternoon of the next day, I had laid down for a nap.  The pills that I was given made me exhausted.  When I went to get up I couldn't.  My legs, feet and ankles were so swollen and I was having a really hard time to breathe.  My husband called 911.  I was taken to the hospital for the next 5 days.  I was told that I was in congestive heart failure due to the swelling.  They managed to get the swelling under control and I was feeling much better.  My cancer doctor said that they had never seen anything like this before.  I have since done a little research and found that she was not telling me the truth.  From my research, I found out that Paclitaxel has a long history (way back to the initial drug trials) of causing allergic reactions just like mine to at least 10% of patients.  The culprit that is causing these reactions is an additive called Cremophor EL.  It's a derivative of Caster Oil that it is what suspends the Paclitaxel in the IV fluid.  Had my doctor made me have the next treatment, I could have died.