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ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Hi Everyone!

 I tried to post a new thread to introduce myself yesterday but kept getting an error message...hoping this works...I'm not usually such a tech mess-up...

I'm new here although I have been fighting UPSC for a year now...I am Stage IVB.  I had a complete hysterectomy in November 2016, 6 rounds of Taxol/Carboplatin, 25 external beam radiation therapy treatments to my pelvis and 3 brachytherapy treatments.  My radiology oncologist noticed two lymph nodes in my neck area appeared to be cancerous when he looked at my scans.  At  the time he got the scans I had just finished chemo and he noticed my pre-chemo scans showed the lymph glands enlarged but post chemo they shrunk. The decision was made to not radiate my neck at that time and to watch.  After finishing my first round of radiation treatments and waiting 6 weeks for the new CT scan the lymph glands appeared to be cancerous again.  So now I am on weekly doses of cisplatin and 30 rounds of radiaiton to my neck where the cancerous lymph glands are.  I have completed 22 rounds of the radiation but unfortunately did not get the dose of cisplatin yesterday due to low platelets.

BTW, I cold capped to keep my hair through Taxol/Carboplatin so if anyone wants more information on it feel free to ask---I retained over 70% of my hair.  I used the "older" method of capping with the caps and not the Dignicap or Paxman machines (they are not available at my hospital).  

I'm 52, divorced, mom to two great kids---my son is in college and my daughter got her degree in May.

 

I'm glad to have found this board and the support you ladies have for each other.  This is a tough cancer to beat and it's nice to have someone who understands....

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1728
Joined: Jun 2015

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

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Thank you for the warm welcome!

I've been afraid to delve to deep into my cancer but this feels like a safe place.

as for the cold capping---it really worked for me so I want to share my experience in case anyone else wants to try it. It's not for everyone but for me (I have very long hair) I wanted to keep my hair.  

off to radiation...7 more to go after today!

EZLiving66's picture
EZLiving66
Posts: 1466
Joined: Oct 2015

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 

Soup52's picture
Soup52
Posts: 904
Joined: Jan 2016

Love your picture! I’m really jealous abpout how much your hair has grown ! Congrats!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1728
Joined: Jun 2015

Eldri, GREAT Picture!!!! I can't believe how long your hair is. Love the color too!  I'm so envious! :-)

EPH56
Posts: 18
Joined: Sep 2017

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

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I rented my cold caps from wishcaps.com

Basica. lly they provide you with an ice chest (large rolling one) and 6 gel filled caps that you freeze overnight in dry ice.  You put the first cap on one hour before they start the Taxol and you change caps every 25 minutes.  Each cap is in its own box and they are numbered so you can keep track of them. I set a timer on my phone for every 25 minutes. You wear and change out the caps while the Taxol is infused and for a minimum of 2 hours after (I usually went 5-6). The caps are extremely cold (25 degrees below freezing) so it is shocking to put them on at first but after a few minutes you get used to it.  

Some cancer centers have the Paxman or Dignicap machines. With those you put on a cap and it is hooked up to a machine that circulates super cooled liquid through the cap.  The advantage is that you don't have to change out the caps so it is nice that you can rest, etc. 

If you decide to cold cap you can't cut your hair or dye or bleach it during the entire time you are having chemo (so for several months). It is suggested to not wash your hair more than twice a week and to use a natural sulfate-free shampoo (I used one made by Beauty Counter). Sleeping on a silk or satin pillowcase also helps reduce drag on the hair and keeps it from falling out. 

I shed more hair than usual but I attribute some of it to menopause. I figure I lost a bit less than 30% and it was mostly in my temple area so it was barely noticeable. It wasn't an easy 6 months with my hair but it was worth it to me.

Ethel if you have any other questions I am happy to answer them. If you want to cold cap you need to get them before your next infusion. It is best to start them with your first infusion but since you haven't lost any you might be ok.

Hugs to all of you ladies for the warm welcome!

MAbound
Posts: 1098
Joined: Jun 2016

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!

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

MABound I am so sorry you are having that issue!  It's one I feared...

My pharmacology oncologist had me take supplements to help prevent the CIPN. Another friend used the same supplements and like me had no issues with CIPN (I did not do the gloves or booties...I was chicken...didn't mind my freezing head but I am a wuss when my fingers and toes are cold!)

She told me to take:

L-Glutamine (3X day)

B6 (once per day)

Omega3 supplements (2 pills 3X day)

Not sure if that is why I didn't end up with CIPN but all of those supplements are good for me anyway so it was worth a shot...

xoxoxoxoxoxo

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

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. 

Kaleena's picture
Kaleena
Posts: 2053
Joined: Nov 2009

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

SF73
Posts: 303
Joined: Oct 2017

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

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

SF73 to answer your question....cold capping is NOT advisable for individuals with brain cancers and blood cancers...but has been deemed safe for breast and gynecological cancers.  

it does work well (using cold therapy) for preventig CIPN...I just personally couldn't do it...

Cold capping has been used for many years in Europe and GP with great success and I believe that the Methodist Hospital in Houston just did a study..it's not as widespread here as insurance will not cover it (it does in GP and Europe) and fewer people know about it. The FDA has just recently approved the Dignicap and Paxman machines for use here and more hospitals are starting to get them. The problem with the machines is that only once patient at a time can use them.

I cold capped with the blessing of my oncologist and my radiology oncologist is very much in favor of it (lol he laughs that he is balding and wishes it could save his hair)...

I would definitely only recommend cold capping with the blessing of one's doctors...in my case her words were "go for it!  I need to see more patients try it".

SF73
Posts: 303
Joined: Oct 2017

Thanks for explaining it to me. 

Camasid
Posts: 4
Joined: Oct 2020

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's picture
cmb
Posts: 614
Joined: Jan 2018

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!

Camasid
Posts: 4
Joined: Oct 2020

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)).

Primavera's picture
Primavera
Posts: 219
Joined: Mar 2019

I had uterine cancer last year but didn't need any chemo. This year I was diagnosed with BC. I seem to be following the same treatments you're following. I just had my third treatment of Adriamycin/cyclosphamide. I have one more to go. Then I'll have 12 weekly treatments of Taxol.

I decided against the hair cap because I wanted the medicine to get to every side of my scalp. They offered it at my center for $400 a session. After I said no, oncologist said "good, because it doesn't work all the time."

But I keep on checking about people who are using it just so that I know if it works or not. I already lost most of my hair. But after the 12 weeky Taxols and surgery and who knows what else, I'll also have another IV treatment for for a year every 3 weeks; I think it thins your hair, so I want to keep on knowing about cold capping just in case.

I'll be curious to know how your hair is going, so I'll keep on checking your reports.

I'm doing the hand and feet icing (with gloves and booties and gel inserts) to avoid neuropathy. I've read about all that pain and I don't want it.

Camasid
Posts: 4
Joined: Oct 2020

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.  

Molly110
Posts: 183
Joined: Oct 2019

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.

alicia2020
Posts: 90
Joined: Sep 2020

I sure appreciate the conversation about cold capping to prevent hair loss. My GO was dismissive of it immediately saying, "It doesn't work, and insurance won't pay for it." Aside from irritating me by acting like hair is not a big deal, it always insults me when people assume I give a rat's bottom about the cost of something!

I had seen a video on YouTube a while back for that system ...Penguin Caps? And it looked like a ridiculous amount of trouble and required a partner to do all the work...which 1) I don't want to do that to my sweet husband, and 2) with the darn virus out there it's a moot point because my doctor's office won't even let my husband come in for appointments, so I could not accomplish the tasks by myself. I looked up wishcaps and was relieved to see that it's basically just a beanie type cap and I could easily do that by myself. So, I'm thinking I might try it,  And since I'm in Houston it would be very easy to cancel and return the equipment if I decide I can't stand it.

Love to hear any other hair tips you have, my friends!

xo, Alicia

Camasid
Posts: 4
Joined: Oct 2020

Alicia,

im doing the Penguin caps and it it absolutely requires a partner.  If it's important enough royou, the infusion itself can be done at a different facility.  I'm staying in the Houston area right now. I have an extra sub zero temperature gun I'm happy to lass on for free (the included thermometer is not very good, so I suggest you invest in one) and extra ear protectors.(Some worm use maxi pads to rite the their ears. I found clip on, tiny ear muffs that work wonders). I'd be happy to share the list with you, and if you need anything last minute, I'm happy to share.

M.

alicia2020
Posts: 90
Joined: Sep 2020

Thank you! I would like that list of the extra things I would need to do the cold capping, please!

I haven' pursued this subject most recently because ....as you might have seen in other posts on this board...I was just informed that it will be another two weeks from today before I get my final pathology report and then am entitled to have a conversation about my chemotherapy. Up until now I have been told it was WAY too early to have a conversation about it. Because I know my ONC has such a negative attitude about it (that it doesn't work), I need to be sure they will even allow it. I know they do approve of icing hands and feet. 

I don't know if I'll be able to tolerate it, but think I should try. I'm prone to awful headaches brought on mostly by stress and strain in the muscles of my shoulders and neck. The ONLY thing that resolves that pain is long hot showers. Sometimes it's so bad, I end up washing my hair even when doesn't need it just so I can stand there for while with hot water pounding on my head! All of which would be very counterpproductive to saving my hair! Still, I'm telling myself that 6 days of that pain (6 cycles of chemotherapy) might be worth it to avoid waiting for 3+ years of waiting for my hair to be back to what it is today.

What do you think? Did you get headaches?

Thx! ❤️, Alicia

Primavera's picture
Primavera
Posts: 219
Joined: Mar 2019

I have breast cancer now, so I read the breast cancer forum, although people are less likely to answer posts over there. But here's a recent cold capping thread I'm following for the future (after chemo I'll be having Herceptin for a whole year; it thins your hair, and I might need to do this, who knows?). I didn't know there were restrictions on washing your hair and a few other things. Maybe more people would come to post and reading their experiences will help you avoid the problems they've had.

https://csn.cancer.org/node/322401

alicia2020
Posts: 90
Joined: Sep 2020

Thank you, Primavera! I will check it out!

I'm still 3 days away from my appointment for final patholog & a time when I can ask for "permission' to coldcap. I'm going to call the wishcaps people on Monday...I'm in Houston, so if I have to drive downtown...instead of waiting for shipping!...I can!

Hooe your treatment is going well!

xo, Alicia

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