Who has had the duo of carboplatin and taxol? How was it for you? Side effects?

GregP_WN

If I don't have the PD-L1 receptor in my tumor I will have this combo in addition to Keytruda. Just wondering how it was for you. It's been 30 years since I had chemo, things have changed a great deal since then.

BuckeyeShelby

Poster child here. I didn't get the nausea, but people do. During treatment, my biggest problem was 2 days after chemo, I'd get severe foot, ankle and lower leg pain. Chemo was generally Thursday, I was fine on Friday. Friday night I'd start taking Norco. Would take it all day Saturday, start weaning back to advil on Sunday and then take it only at night for a couple days. I also used a cane for about a week. The gift that keeps giving for me is the peripheral neuropathy. Mine's pretty bad. I have my gabepentin. Neuropathy is common, but it doesn't last for everyone. I was just lucky, I guess. The leg pain is not incredibly common, but it is a side effect. Hope that helps at least a little. All in all, chemo was not as bad as I was afraid it would be. But I know that is not true for everyone

LiveWithCancer

I didn't have taxol, but I had carboplatin. It (or Avastin or Alimta or the threesome) made me really nauseous for several days after I got it. I had the typical fatigue. Truthfully, from what I know, it wasn't all that different from what you likely experienced 30 years previous (not much progress had been made, at least in lung cancer treatment, over 30 years, until they finally figured out some targeted therapy and, of course, the immunotherapy).

Luckily, I didn't get much neuropathy. I have issues every once in a while, but it is infrequent and easily combatted.

Good luck, Greg. When will you know what treatment you'll be getting and when do treatments begin? (I'm surprised you get Keytruda if you don't have the PDL-1 tumor burden required. Back when I started immunotherapy, the primary difference between Keytruda and Opdivo was that Keytruda required a 50% or better PDL-1 burden (I think that's the right percentage) and Opdivo could be used regardless of how much PDL-1 there was.)

GregP_WN

I should know next week. The oncologist told me yesterday that they already sent my tumor to their lab for testing and it can take up to 14 days. Vandy is one of the NCI designated hospitals in TN and they have their own lab for doing this sort of thing. I signed up for a clinical trial that tests an injection of Sting Agonist (ADU-S100) directly into the tumor while receiving Keytruda to see how much improvement there is in the treatment response. I'm up for anything and I feel like being in a trial is sort of being a lab rat to help someone else in the future. Just like those first few hundred volunteered to be injected with keytruda and opdivo. Plus, it might just help.

Richardc

Greg, I had this combination during my treatment. Chemo was on Wednesday and I usually started feeling the side effects by Friday. Nausea and very tired. By the time Monday rolled around I was ready to go back to work. The doctor was able to adjust my steroid medication to help overcome the side effects. I know that everyone is different and our reaction to this combo will vary. Good luck on your treatment.

beachbum5817

I had Carboplatin and Taxotere. I was able to work the entire time, but by the end of the treatment, I was dragging. I never got sick or nauseous I am not sure which gave what side-effects. I did lose my hair. I had problems with my fingernails, but I did not lose any of them. The discoloring went away for all of them except the 2 pinkie fingers. My eyes and nose ran constantly. I got neuropathy in my feet. That has never gone away, and I can't find anything that helps with the pain.

ssp

Started carboplatin/taxol/erbitux mar11. 6 IV sessions. Hair loss, terrible skin RASH (eribitux) & just a little fatigue. ZERO nausea. I requested to AVOID "cisplatin" if at all possible. Then 27 2Gy (54Gy total) daily radiation concurrent w/ 7 more IV erbitux (skin RASH TERRIBLE)!!!!! I think they call this "Induction Chemotherapy" based on a de-escalated/de-intensified regimen.
Healthy 63yr male OHNSCC -- T4N2M0 p16. So far the "poison" docs seem satisfied w/ response. The skin RASH is the WORSE. 2nd is the lack of taste. All liquid diet. YUK!
Good luck!

ssp

If I have a reoccurrence, I will NOT go thru the chemo/radiation treatment option again!
I will SEEK OUT the "Alpha DaRT Technology" researched by Alpha Tau Medical.
Clinical Trial just started jan2020 @ Memorial Sloan Kettering. I did not qualify b/c I was "not previously treated!" Research "alpha DaRT technologies" or Alpha Tau Medical" VERY encouraging results thus far! Their mfg plant in MA has recently produced its 1st batch of treatment. These "poison" cancer treatments are ludicrous! But when you have very few limited options what the HELL do you do????

Teachertina

My oncologist is the head of the cancer center near me. He is very pleased with the newest results of immunotherapy treatments. I haven’t ever been given chemo or radiation, only several surgeries over the last 14 years because they don’t work well on the RCC that I’ve had. With only part of one kidney left, he assured me that if needed the immunotherapy will be there for me. I have been able to buy time while research was ongoing on this and other procedures I’ve had like cryoablation. We must keep going while more smart people figure out more treatments for all of our cancers! Keep on keeping on everyone! Good wishes to you Greg for just the right fit to knock it out this time!

LiveWithCancer

@GregP_WN - I got Opdivo through a clinical trial - before the drug had a name and hardly anyone had ever heard of some strange treatment called immunotherapy. I had to go to the emergency room shortly after I started getting my Opdivo infusions and told the doctors I was getting immunotherapy. They acted like I was crazy. No one there (same hospital complex as my cancer center) had ever heard of such a thing at all.

I would get into another trial in a heartbeat - I loved being in the trial. When I joined the trial, it was completely altruistic. I had NO idea that it would actually benefit me while benefiting the knowledge of the scientists/doctors. What a surprise when it benefited both me and science.

I found that being in a trial meant that I got a lot closer to my team - and there was a whole team that cared for and followed me. I was never a number and every little thing was followed. The number of tests performed far exceeded what happened after I had to get out of the trial. For instance, I had two scans every 6 weeks for years. (Hello, radiation!!!! No telling what THAT did to me long term, but at least we knew what my lung cancer was doing. When I had to quit the trial, the number of scans decreased by one and it was done quarterly instead of every 6 weeks.)

Kylerem

I had 8 rounds of Carbo/taxol. Honestly worst side effect was the constipation. Some fatigue and body aches which were easily managed. I was lucky to not have neuropathy though I have heard from others that that side effect is rough. Good luck with your treatment

Kp2018

Hoping that you don't have to face this combination, but I'll throw my two cents in. I did not have Carboplatin (though recent studies are showing that would have been a good addition to what I was given for my cancer) but I had 12 weeks of Taxol.

Taxol's toxicity is ameliorated by the administration of substantial doses of steroids, so don't expect to sleep well during its course.

Its neurotoxicity results in peripheral neuropathy in some patients. Some studies indicate that cryotherapy can prevent or significantly reduce the neuropathy. https://academic.oup.com/jnci/article/110/2/141/4443215 and https://www.breastcancer.org/research-news/cryotherapy-may-prevent-taxol-neuropathy.

Doing cryotherapy is a pain in the neck unless your treatment center offers it, but I hope you'll consider it. Loss of manual dexterity from neuropathy could interfere with your beautiful woodworking, which gives you so much joy.

Still fervently hoping for PD-L1 !!!

smlroger

First I wish you the best.
I did the combo after my head and neck cancer moved into my bones in 2018. I was suppose to do 8 rounds but ended up doing 5 full strength and 1 half strength rounds due to side effects. I did not have any nausea issues at all which I was most grateful. Within a couple of days every bone in my body hurt for several weeks, gradually kind of going away. Severe fatigue throughout all the treatments which still continues to some degree. The biggest issues was severe neuropathy in feet that developed after the first round, eventually going to my hands and fingers as well. This was the reason we stopped treatments early. Most of my hand and finger issues have gone away most of the time but not my feet. Due to the numbness, I have some balance issues which is a real problem as I still work part time, am an avid walker and do a lot of work in the yard. Not knowing where your feet are on if they are on flat ground or a rock is a real problem. I also lost all my hair, head to toes, which for the most part came back with a little different texture and color. All I can say is that in 2018 when my cancer came back I was told probably 6 months to 2 years. Here it is 2 years later and still going, nothing growing and nothing new, so I guess the combo did its job. Being a quality of life over longevity kind of guy there are some days I wonder if it was for the best. When it comes back will look at the options and go from there.
Hope this helps, know you will do well.

Lauraandmary

Induction with tacos and carboplatin; tolerated pretty well with mild nausea and vomiting; complete hair loss.

GregP_WN

Well as it turns out I won't be getting these two drugs. My tumor tested positive for the PD-L1 receptor so I will start Keytruda and a trial drug that is in phase II that doesn't even have a name yet. It has some numbers to identify it. I go to Vandy tomorrow to start the process which is quite complex. I have blood work again, an EKG, CT scan on Friday, meeting with an ENT who will be injecting my lymph node tumor with the trial drug, meeting with the oncologist who will be overseeing the trial, and the Keytruda infusions. And a few other things. I opened up my page on the Vandy My Health portal and there was a list of appointments. We went from 0 to 60 in 2 seconds it seems.

Thanks for your input o on this question. It's still possible that I could come back to this treatment regimen if the trial fails.

Kp2018

If there's "good" news with active cancer, this has to be it! I'm so glad that you'll be able to get these wonderfully promising treatments. After the grinding waiting, enjoy traveling in the fast lane at Vandy.

Mensacowgirl

I have neuropathy in my feet from carbo/taxol. I got it two days after the first treatment so bad that I could not let anything touch my feet - the floor, bed sheets, socks, etc. Dosages were changed and drugs stopped but it is getting worse 7 weeks post chemo. Two different doctors have said that it will not go away. It has destroyed my quality of life. I am going to have to sell my show horse I got just before chemo started because I can't feel my feet and legs enough to be an effective rider. My husband wants to go on bike rides and hikes but I am afraid because I can't feel my feet.