Gem / Carbo

[Barmycharm]

Hi Ladies

I hope you are all as well as can be.

I had my day 1 cycle 2 of gem carbo yesterday after missing 3 lots because of pneumonia. My bloods had read fine so oncologist advised to restart.

I had 2 anti sickness tablets and 10 steroids first.

They started carbo infusion and I was fine at first but after about 10 mins I started to get headache and nausea. Thought it might be migraine. However then I started getting weird sensation round my mouth up my cheeks and then in right hand ( strange that as picc line is in my left arm so you’d think it would start in that one first) It wasn’t pins and needles numbness, I have regular neuropathy and it is admit like nerve pain. It felt like I was burning in the face and hands, by now spread to left hand also. My hands were on fire and I wanted to scratch them like mad.

The nurses said far from being flushed on face I was deathly pale.

They were extremely good, stopped infusion put through a saline solution then some anti sickness and got me moved to a bed. I then started getting uncontrollable shaking and the same sensations in my feet. They called oncologist who checked all my obs and all were fine, not even low BP which I often do get.

She suggested we either stop and come back Monday to start again or try to reinfuse much more slowly. I opted for the slow drip, couldn’t stand the anxiety over the weekend so would give it a try. It did the trick. I was able to take test if infusion and the gem afterwards, in fact slept through it!

So I wonder if any of you ladies on this regime have experienced anything like this, or indeed after a second line including carbo as this was the one I reacted to and the nurse said on a second line of carbo sometimes you can get reaction.

I know a few of you responded last week to me saying you were struggling on this so I’d like to hear from you if possible.

Today I’m feeling the normal post chemo terrible aches pains headachey fatigued but also can’t sleep cos of steroids but all to be expected and accepted!?!

love and hugs to all

Claire xx

[Lyndy]

Oh Claire that sounds horrible, glad you are through it xx

[Barmycharm in reply to Lyndy]

Thank you Lyndy hope you’re ok atm xx

[Katmal-UK]

Hi. From what you are describing it sounds like a reaction to the carbo which can happen. I had a grade 3 anaphalatic shock and can no longer have it. The fact you were able to tolerate a slower infusion is good and your team will be aware of this next time. Best wishes.

[Barmycharm in reply to Katmal-UK]

That sounds nasty. I’m glad I got through it on slow drip but will now be twice as anxious for the next one. The things we have to go through!?! Take care xx

[Jayred]

I had a reaction to carbo second time and opted like you to go for slower drip. All was then ok and I’ve never had the same problem again in spite of having carbo 6 more times. Good luck next time but I think you should be ok.

[Numi]

I had a reaction to carboplatin during the same regime in 2021 which was treated with extra steroids and antihistamines. I managed to complete the treatment with extra antihistamine and steroid before each infusion and slowing down the rate. When I recurred again last year my oncologist wanted to try carboplatin again; this time on its own, so I had a desensitisation regime with steroids and antihistamines in the days before treatment and the carboplatin itself being given in 4 batches, each a bit stronger than the one before. I also had a portacath fitted rather than a picc line and all that worked a treat. I completed all 6 cycles with no allergic reaction and no vein irritation.

[marmay88o]

Morning,

i’m sorry to hear that you had bad reactions with both carbo and Gem. I had the chemo a year and a half ago and did not have any side effects. Sending you love and prayers. Marissa.

[Leniko]

I absolutely can relate. I was diagnosed w OVCA 1C in 2008. My first Carbo (w Taxol) infusion back then went well.

This past winter after a recurrence they paired Carbo up w Gemzar , and I started getting itchy hives. My oncologist was worried that this was not a good sign so they took me off the Carbo and just continued me on Gemzar. I would have liked to do the slow drip Carbo like you did, but he didn’t seem keen on that idea.

Sadly, the Gem by itself didn’t shrink the tumor that had appeared on my back (psoas) muscle. Gemzar was quite debilitating (fatigue, shortness of breath) , so I had some radiation and will know in a few days via CT scan whether it’s reduced my tumor size.

Carbo can be quite powerful and I’m glad they were keeping a good watch over you. Wishing you the very best as you continue the journey.

[Alfiepop in reply to Leniko]

Hi Claire.

I too can relate to your experience. Although my treatment was Taxol/Carbo.

I’d been fine for the cycles before debulking surgery but on the second cycle of the 2 cycles I was due to receive I had a reaction to the Carbo. It’s a frightening experience isn’t it.

Once I’d recovered, a nurse explained that when it happens it’s common for it to occur during the second cycle. As it had been a few months since my last treatment my body was reacting as though the drug was unknown to it.

The consultant decided to abandon the infusion and got me started on maintenance therapy soon afterwards.

I’m still on this at present

Wishing you the best

Lisa

[Barmycharm in reply to Alfiepop]

Sorry think I got my replies muddled there?!

Interesting that the nurse told you about the chances of it occurring on the second cycle. So hopefully I’ll be ok with the third?!

I hope you’re getting on well with the maintenance programme and that it’s working for you xx

[Barmycharm in reply to Leniko]

Hi have we communicated before because I also have a tumour on my psoas muscle which is apparently quite rare? So same as me with the gem/ carbo combo. Hopefully now they will be on my case and the slow drip will help me to continue. Good luck with the radiation results, let me know how you get on xx

[Leniko]

yes. Quite rare. I will let you know how I did w my radiation which I had in August. It takes a few months for inflammation, scar tissue, etc to settle and supposedly the Rad keeps working for awhile after. My CT is tomorrow and I’ll know later this week how it did. Any and all prayers and positive energy appreciated

PS- have you been on maintenance Avastin? That kept my 2 psoas tumors from growing for quite some time.

[Barmycharm]

Definitely sending you best wishes and positive energy. I am in UK and I don’t think we have Avastin available here xx