New to Forum

Hey CK,

Glad you were able to get your technical issues resolved.

And, already reaching out to help the next lady that goes through chemo. That's what is so great about this group.

Love and Hugs,

Cindi

Best of luck, CK, with your treatment.  I'm glad you found us.  I know Lou Ann had radiation to her neck.  She was also Stage IV and is being treated with Keytruda. Chances are, there is someone on this board who is going through the same treatment as you and it sure makes a woman feel less alone in this fight.

Love,

Eldri 

I am stage 1A-Serous Grade3 UPSC.  Had a full hysterectomy 9/8/17 and began chemo 10/2. I have my 2nd/6 rounds next WED.

I‘d like to hear more about cold capping. I read on here someone began to lose their hair 15 days after their 1st infusion. I haven’t lost any - other than the thinning hair I have anyway - BUT just started to have a sensitive scalp today 10/18.  

Best of luck to you and thank you for sharing your story.

Ethel 

eph0556@yahoo.com

I'm a big, big fan of hypothermia during chemo. Like you, I didn't find out about it until after my 1st infusion and I'm afraid that's too late for the cold capping to save your hair. Hair loss is inevitable once you've had the 1st chemo. 

I had a huge problem with CIPN (chemo induced peripheral neuropathy) from the first infusion. These drugs are neurotoxic and that's a common side effect. The burning pain was unrelenting and unbearable for me. Like having my feet and legs in hot coals without being able to take them out even for a moment.  I got the hypothermia mittens and slippers to keep that from getting worse with subsequent infusions and found that they also helped tremendously between treatments to cope with the pain without resorting to drugs with limited effectiveness as well as some potential serious side effects of their own. Keeping the mittens and slippers frozen was a big chore to deal with during infusions and I needed 4 pairs of each to last long enough, but they were so worth it.

I also wore an ice bag on my head during infusions just because it felt good. I think it may have slowed down the hair loss on the top of my head because I never shaved my head and never went cue ball. I kind of kept a dandelion fuzz which I think may have spared me the scalp sensitivity that so many mention having. When tangling became an issue with my very thin hair, I just cut it to about an inch long without worrying about how even I got it.

So definitely look into hypothermia to help you get through chemo, but understand that it's not inexpensive and it's probably too late to save your hair. I found wearing a wig rather convenient and didn't really didn't mind it. 

Good luck with the rest of your treatment!

I‘m convinced the acupuncture I got during my chemo limited my neuropathy to just a little in my toes (which I still have a year later ). I’m considering going back since my anticoagulant therapy is finally stabilized. 

Sorry, this could be a very silly question. Not sure if i understand how this works.

according to one website:

'How to Use the Cold Cap Therapy, or modern-day scalp cooling, involves the use of a special cap or set of caps, cooled to very cold temperatures, and worn for a period of hours before, during and after each chemotherapy treatment. It is believed that the cold temperature constricts the blood vessels leading to the hair follicles, reducing the amount of chemo drugs that reach the follicles during the period that the caps are worn; also, that the cold puts the follicles "to sleep," temporarily limiting their metabolic activity.'

if that is true and if there is a chance of metastasis in the brain, would this approach intervene with therapy ? If extra cold slows down the metabolism, would it make sense to do it foor hands and feet to avoid CIPN? But what if there is a chance of metastasis in the bones? I read this weird case study: https://www.ncbi.nlm.nih.gov/pubmed/12423807

CheeseQueen57 said:

Acupuncture

I‘m convinced the acupuncture I got during my chemo limited my neuropathy to just a little in my toes (which I still have a year later ). I’m considering going back since my anticoagulant therapy is finally stabilized. 

I just completed accupuncture.  Although it didn't alleviate the pain altogether, it really reduced it.

I have inflammatory BC, and have had two of the AC chemo infusions (out of 4 total) so far. I have been cold capping (penguin caps). AC chemo is aggressiv, and so far I've kept my hair, but I'm shedding quite a bit and lost a bunch of hair.  I might end up losing it, but to me it's worth the try.  The issue I'm having is that My hair seems to be tangling and knotting, probably due to the shedding.  I have natural curly hair, but it's not course... it's medium/soft, but I have (had?) a lot of it.  It seems more btittle now, which doesn't help with knowing and tangling. This was never an issue for me before because I used enough product to moisturize and define it.  How did you take care of your hair during Chemo? Did you have any issues with knotting/matting/tangling?

cmb said:

Hair Problems

While we've had a fair number of women on this board who have iced their hands and feet to prevent neuropathy, I can only remember a couple who used the cold caps in the past, although some of members going through treatment now are planning or have begun to cold cap.

I don't recall anyone commenting on their hair becoming less manageable during treatment, but then again most of us here lost our hair.

Were you told not to apply any conditioners to your hair during treatment? Since I didn't have any hair,I didn't need to do this, but some women have had skin irritations on their head that they needed to address. See https://csn.cancer.org/node/320560 and https://csn.cancer.org/node/316593

You'll see that some of the responses included recommendations for specific shampoos or other treatments that may help with your hair problem.

Good luck!

Thanks for the reply and the link.  I am using a conditioner that is recommended for chemo.. natural, ph balanced, and no irritants. The issue could be that I'm undergoing AC chemo for BC and the chemo is just very strong. The only place I could find any information of knotting or matting was on the Paxman website.  Paxman is one of the scalp cooling machines approved by the FDA a few years ago. they have prettydetailed description what exactly what I'm going through and some advice about how to deal with it, but very generic. (My hospital doesn't have Paxman available for use with AC chem, so I'm doing cold capping on my own.  If I'm able to keep my hair through the AC chemo (have two more infusions left), then I'll be able to use Paxman scalp Collins for the second stage of my chemo (12 weekly chemoS)).

Camasid said:

Also...

I also wanted to mention that I read that freezing your hands and feet also helps with nail issues on your hands and feet.  It works like cold capping.  Nails are rapidly diving cells that are affected by some chemos, so icing during chemo makes the nail cells dormit, which means that less chemo is absorbed By your nails.  

Good luck with your cold capping. I decided against it but am always happy to hear about women for whom it is working. I think if you've kept most of your hair, you're doing really well as I think less than half of the women who do it keep most of their hair. I understand that people with thicker hair may be more likely to lose some of it, since it may be harder for the cold to reach as much of the scalp when hair is really thick. Fingers crossed for you!

Many of us have iced our hands and feet since the standard chemo for uterine cancer seems to be two drugs associated with periperhal neuropathy. I haven't heard of anyone with uterine cancer icing for their nails, but I iced against neuropathy and my nails were  thinner but essentially fine.

Warm best wishes.