Chemo and Immunotherapy: Any tips before I start?

Posted by sabwal @sabwal, Oct 1 7:19am

Is anybody on a treatment plan of Carboplatin-Paclitaxel
& Dostarlimab/Jemperli? The side effects lists are freaking me out! Also, wondering about cooling caps, gloves and socks. God, I hate being cold but guess I'd suffer through that to avoid neuropathy. Any tips or shared experiences are greatly welcomed.

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Profile picture for sabwal @sabwal

@jc100 I'm so glad you made it through! I've heard the cooling gloves and socks can help reduce the neuropathy - I'm going to try them (though I am super sensitive to cold).
I guess I need to just wait and see how my body responds.

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@sabwal
I did use cool compress and that helped. I hope you do not get much side effects. The year I had the treatment, I did not socialize much to avoid getting sick since my white blood cell count was low.

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Profile picture for sabwal @sabwal

@ffr That totally resonates! I've already experienced that...people who rarely reached out when I was totally healthy suddenly want to see me or talk. I find it insulting - they want information (a form of power in social settings). It will be rainy and cold for much of my treatment - easy to stay away from others. I'm planning a bubble of friends & family based on their exposure to others as well.
Lots of life lessons will come from this.

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@sabwal

You summed it up perfectly!
“Power in social settings.”

I cannot tell you how many people whom I had never told about my cancer still come up to me with their pity eyes asking for information. I deflect. And to those whom I told and learned not to trust, I’ve told them that I don’t choose to discuss it. They no longer ask. I consider it likely, however, that they still enjoy the power in social settings of discussing my behavior. I really hate that the first thing they think about me when they see me is my cancer.

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Profile picture for sabwal @sabwal

@ffr That totally resonates! I've already experienced that...people who rarely reached out when I was totally healthy suddenly want to see me or talk. I find it insulting - they want information (a form of power in social settings). It will be rainy and cold for much of my treatment - easy to stay away from others. I'm planning a bubble of friends & family based on their exposure to others as well.
Lots of life lessons will come from this.

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@sabwal exactly. Family and friends who want periodic updates don't deserve them. I give as little info as I can and always say I'm doing ok. I don't need anyone spreading my bad news but me.

I will say though that best investment I've made since this journey started was a recliner with massage and heat from bed bath and beyond for only $300. The vibrations make the pain in my legs so much more tolerable. It vibrates from ankles all the way to mid back. 6 settings. The heat hits the lower back area. I'd be so lost without this chair I think. The bone pain was and is terrible even now but I keep saying it's not all for nothing. 🙏🏻

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Profile picture for carol1024 @carol1024

@sabwal exactly. Family and friends who want periodic updates don't deserve them. I give as little info as I can and always say I'm doing ok. I don't need anyone spreading my bad news but me.

I will say though that best investment I've made since this journey started was a recliner with massage and heat from bed bath and beyond for only $300. The vibrations make the pain in my legs so much more tolerable. It vibrates from ankles all the way to mid back. 6 settings. The heat hits the lower back area. I'd be so lost without this chair I think. The bone pain was and is terrible even now but I keep saying it's not all for nothing. 🙏🏻

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@carol1024 oh wow! Okay so I wasn't aware the bone pain was that bad! I will definitely invest in one. The heat must help too - I get cold so easily.
Did your care team have any other remedies?

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Profile picture for sabwal @sabwal

@carol1024 oh wow! Okay so I wasn't aware the bone pain was that bad! I will definitely invest in one. The heat must help too - I get cold so easily.
Did your care team have any other remedies?

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@sabwal I'll try to post pic here but usually says it's too large ...I order this stuff from the Dermavitality web site. They make products specifically for cancer patients and I just ordered the hand and foot calming cream for the peeling of my hands and feet with the lenvima/keytruda. Nothing has happened yet but I'm ready. I'll order the neuropathy cream forever I guess. Lol

It's a little pricey...I think $30 by the time it gets to me....but worth it. All natural ingredients.

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Profile picture for sabwal @sabwal

@carol1024 oh wow! Okay so I wasn't aware the bone pain was that bad! I will definitely invest in one. The heat must help too - I get cold so easily.
Did your care team have any other remedies?

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@sabwal that cream says neuropathy but it feels so good because it has a cooling effect like nothing I've had before.

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Profile picture for Helen, Volunteer Mentor @naturegirl5

@carol1024 It’s good to see you here again. Your 6th type of chemo? I’m relieved to know your oncologist is persistent in working with you.

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@naturegirl5 yes first was the carbo/paclitaxal then Herceptin then Enhertu then Doxorubicin which we figured would fix any thing, and now I'm on the lenvima/ keytruda. I actually have a local oncologist and I have my oncologist surgeon who is an hour away in Orlando. I have televisits with him every couple months. The 2 doctors are working together. The next thing, if this one isn't successful, will be hormone blockers since my cancer was hormone fed.

So far though this treatment seems it might be doing more than any other. 🤞

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Profile picture for carol1024 @carol1024

@naturegirl5 yes first was the carbo/paclitaxal then Herceptin then Enhertu then Doxorubicin which we figured would fix any thing, and now I'm on the lenvima/ keytruda. I actually have a local oncologist and I have my oncologist surgeon who is an hour away in Orlando. I have televisits with him every couple months. The 2 doctors are working together. The next thing, if this one isn't successful, will be hormone blockers since my cancer was hormone fed.

So far though this treatment seems it might be doing more than any other. 🤞

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@carol1024 I’m so glad to hear that your two doctors are working together for your benefit and have a good plan if this combination is not effective. Your current progress is encouraging.

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Hi, Sabwal. Try not to worry. I hate to say it because many have struggled with the chemo, but many do not. I had stage 3c high grade serous cancer, for which I was treated with taxol and carboplatin. After one round the taxol was changed to Abraxane, which has the same active ingredient as taxol but a different binder because many people are allergic to the binder in taxol. Also I opted for weekly abraxane/taxol treatment to try and reduce the side effects. I made sure I ate well and I iced religiously to avoid neuropathy. I did not cold cap, as I understand it’s not always effective and I wasn’t willing to spend the additional icing hours required. I went through seven rounds of chemo, surgery, and then three more rounds of chemo. I was looking a little rough by the end, but I only had nausea once or twice and pretty much went about my life. I shopped, went out to eat, and traveled by airplane from Orlando to Houston on many occasions. I was able to drive to chemo two hours away on a weekly basis. I had seven rounds of chemo, surgery, and three more rounds of chemo. My numbers remained stable and I have no lingering neuropathy. I did lose my hair, but I wore an elastic scarf I got off of eBay and it was fine. My doctor said the most important thing was nutrition, nutrition, nutrition, so I drank smoothies of all kinds almost daily. For me vegetables helped to keep the nausea at bay. I was 68 when I was diagnosed and continued to walk 3 or 4 miles with my friends. So some of us do just fine and the others get through too, though it’s not always as easy. Accept help from your loved ones and friends, try to stay positive, and keep moving forward. You have no other choice if you want to live. You will get through this and in the end I suspect will find that the process has been rewarding. I’m now in a clinical trial and doing fine, living a mostly normal life. Hugs to you. We are all pulling for you.

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Profile picture for jc100 @jc100

@sabwal
I had the Carbo-taxel combination and Dostarlimab together. Carboplatin for six cycles and Dostarlimab for one year. I only had Paclitaxel for two cycles and stopped because of neuropathy. I was supposed to have Dostarlimab for two years but stopped because of side effects in my heart. Even though I had lots of side effects, none were life-threatening. Besides, I have a high level of allergies in general (top 5th percentile). My cancer team was very responsive to all of my side effects.
My treatment ended in December of 2024, and I am in remission. My cancer was a stage IIIb serous endometrial cancer. It is a rare and aggressive cancer. The advanced treatment available today is why I am still living.
I know the side effects sound scary, but many patients don’t experience them. I hope you are one of those patients who have minimal side effects.

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@jc100 I had 6 cycles of the standard carboplatin, taxol, as well as immunotherapy (traztuzumab or Herceptin). I've not connected with anyone here who received Herceptin. Anyone else on Herceptin for endometrial cancer? I know it is most often used for other indications. Healing wishes to all.....

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