Topic: Cold Caps Users Past and Present, to Save Hair

Forum: Managing Side Effects of Breast Cancer and Its Treatment —

Posted on: Jun 14, 2009 04:04PM

Posted on: Jun 14, 2009 04:04PM

Can-D wrote:

Hi all, I wanted to start a forum for all us that are using the cold caps to try to save our hair.  I am on FEC100 X3 followed by Taxotere X3.  My dosage unfortunately is not a guaranteed success.  I am 40 days out from my first treatment and will have my third June 17.  So far I have thinned but have not required a wig.  I have no bald spots; however, around my right ear is the thinnest..I think because the cap wasn't tight there.  All in all, I am pleased to still have a good covering.  If you are using or have used the Cold Caps, I would love to hear your experience.  Take care, Candy

FEC100 X3 followed by Taxotere X3, Bilateral Mx w/ immediate reconstruction..Wake Me Up When September Ends!!! Dx 3/19/2009, IDC, 3cm, Stage IIA, Grade 3, 0/2 nodes, ER+/PR-, HER2-
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Jul 27, 2009 08:31PM gmp300 wrote:

SoCalLisa-Hello there! I would just like to add that I had early bc 13 years ago and just had a reacurrance. I guess the point is that with this awful disease that is the black cloud that follows you around thruout your life-worried about a reacurrance. I personally do not believe it had anything to do with cold caps.
The cold caps that were used 15 years ago were not the same as the ones we use today. There is a new inventor and new caps. Probably the only ones who should not use them is someone that already has mets-Stage 4 cancer.

dreaming-Iam using the penguin cold caps right now and Iam finished with 3 tx of taxotere and cytoxin and Iam having my 4th tx on Thursday. Both chemo drugs that Iam getting has the Se's of hair loss. So far I have all of my hair and feel very good about it. When I finish my last tx I can get back to my normal looking self right away and I won't have to deal with trying to regrow my hair which can be a long process.I wish more women knew about this! It takes the sting out of getting chemo!

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Jul 27, 2009 09:37PM makingway wrote:

SoCalLisa-You know one person who used caps 15 years ago? And they had a recurrence? That is quite a leap to attribute your friends recurrence to cold caps. What about all the other recurrences for people who didn't use cold caps??? Where was the reccurence? These are not the same caps that were used 15 years ago. And the only possible worry of recurrence worth considering is scalp metastasis, which is <1%. I wish we had stats like that when considering radiation, chemo and hormone blockers whose risks for both recurrence and side effects are much higher!!! Why do women suck on ice chips when doing chemo? It's to prevent the lining of the mouth from falling apart,so to speak. And women who put their nails in ice water to prevent them from falling off. I guess we need to be concerned about metastasis to the mouth and nail beds also. Here is some information on scalp metastasis: Scalp Metastases

One of the considerations in scalp cooling is the incidence of scalp secondaries which if present may not be treated by chemotherapy. It has been suggested that if blood flow to the scalp is reduced delivery of chemotherapeutic agents is reduced increasing the likelihood of cancer cell survival.

In early stage breast cancer, the incidence of the scalp as the first site of recurrence is very low. Dean et al (1983) found only 2 patients with scalp metastases in 7800 women with breast cancer treated with mastectomy, with or without post operative adjuvant therapy, an incidence of 0.025%. Clearly, primary metastases are rare.

Does scalp cooling increase the incidence of scalp recurrence in early stage breast cancer?
The most extensive literature report on scalp cooling was conducted by Tollenaar (1994) who reviewed 25 publications (1973 - 88) with a total of 1282 patients. No case of scalp metastases was reported in scalp cooled patients receiving adjuvant chemotherapy. In their own scalp cooling study of 35 adjuvant treated breast cancer patients no case of scalp metastases was found with a mean follow up of over 4 years. More recent published studies involving scalp cooled adjuvant breast cancer patients have not reported any scalp metastases (Ron 1997, Lemanger 1997).

The review by Tollenaar reported cases of scalp metastases in five scalp cooled patients with disseminated breast cancer out of a total of 96 patients. It remains uncertain whether these lesions would have occurred in the absence of scalp hypothermia.

Overall the problem of scalp metastases is very difficult to determine either way. There is currently no clinical or scientific evidence that the incidence of scalp metastases is increased in scalp cooled patients. The condition is very rare and the patient sample required to establish the answer in a randomised study borders on the impossible.


Literature commentary: Scalp Metastases
"...a practical concern is the risk of scalp metastases. This risk appears to be minimal. Fisher studied 7800 women with breast cancer treated with mastectomy alone or with post operative adjuvant therapy. Of these patients, only 2 experienced scalp recurrence (approximately 0.025%) as their first site of recurrence. Both these patients had positive lymph nodes and one received adjuvant chemotherapy. These date clearly indicate that there is a minimal risk of scalp metastases as the site of first recurrence in breast cancer patients........we believe that scalp hypothermia can routinely be used with a variety of solid tumours such as breast, ovarian, pancreatic, thyroid, gastric, osteosarcomas etc."

Dean J.C. et all J Clin Oncol 1 33 (1983)

"It is concluded that the hair preserving effect of scalp cooling is mainly due to the metabolic effect of cooling, and only to a minor extent due to the flow reducing effect"

Bulow J at al Scand J Clin Lab Invest 45 505 - 508 (1985)

"None of the patients (in our study) that were treated with scalp hypothermia developed scalp metastases (mean follow up time 48 months) 5 cases of scalp metastases after scalp hypothermia of 96 patients treated for disseminated breast cancer were reported in two series. No case reports of scalp metastases after scalp cooling for adjuvant chemotherapy for breast cancer were found in the literature."

Tollenaar RAEM et al Eur J Cancer (A) 30 1488 - 1453 (1994)

"...nor has the literature yet yielded reports of any increased incidence of scalp metastases in the women that have undergone hypothermia in the past 15 years."

Ron IG Support Care Cancer 5 136 (1997)

"No reported scalp metastases after the cold cap in adjuvant breast cancer chemotherapy was found in the literature. In our experience, we have been using the cold cap for about 15 years and no increase in the rate of scalp metastases has been observed.

Lemanger M et al Eur J Cancer 33 297 - 300 (1997)

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help Dx 3/2/2009, ILC, 4cm, Stage IIB, Grade 2, 1/19 nodes, ER+/PR+, HER2-
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Aug 16, 2009 08:07PM KarenVW wrote:

Hi everyone!

For those using the Penguin Cold Caps, I'm curious how it is going.  Are they working?

Thanks!

Dx 5/5/2009, IDC, 1cm, Stage I, Grade 3, 0/3 nodes, ER+/PR+, HER2-
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Aug 17, 2009 01:56AM London-Virginia wrote:

bump

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/25/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 6/30/2009 Chemotherapy 10/4/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/4/2010 Breast
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Aug 17, 2009 02:10AM London-Virginia wrote:

From Cancer Research Fund website, UK

Reducing hair loss from chemotherapy (cold caps)


If you find the thought of losing your hair very upsetting, your doctor may be able to suggest a treatment that is less likely to cause hair loss.  Sometimes there is a choice of drugs you can have.  Your doctor will want to give you the treatment that is most likely to work best in treating your cancer.  But there may be other cancer drugs that work just as well.  It is certainly worth discussing.
 
Sometimes, the amount of hair that falls out can be reduced by using a 'cold cap'.   While you are wearing the cold cap, it lowers the temperature of your scalp.  This reduces the blood flow in the scalp.  So the amount of drug reaching the hair follicles on your head is lowered too.  As smaller amounts of the cancer drugs get to the hair follicles, the hair is less likely to die off and fall out.

Cold caps don't work for everyone.  They only block certain drugs and are not suitable for use in all types of cancer. 

You can't wear a cold cap if you are having continuous chemotherapy through a pump either, because you would have to wear the cold cap all the time, 24 hours a day.

Unfortunately, even if you can have it, the cold cap may not work.  You may still have hair thinning and some people still lose their hair completely.  You can't tell whether it will work for you until you try it. 

If you have scalp cooling, you will have to spend longer at the hospital having your treatment.  You have to wear the cold cap for a while before you have your drugs.  The cold cap will make you feel cold all over, so it can be more comfortable to wear a jumper or ask for a blanket.  Hot drinks will help you feel warmer.  You may find the cold cap gives you a headache. 

Some doctors are not happy about their patients using scalp cooling for any type of cancer.  They worry about the risk of cancer cells being left in the scalp.  In theory, there is a risk that this could happen.  But there has been very little research into the risk of cancer coming back after scalp cooling.  So there is not enough evidence to know for sure whether scalp cooling is completely safe for most types of cancer.   Some patients are not keen on scalp cooling for this reason, but others choose it.  If you are interested in trying this way of keeping your hair, ask your specialist nurse if it is suitable for you.  You can discuss the possible risks with your specialist if you are worried.

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/25/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 6/30/2009 Chemotherapy 10/4/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/4/2010 Breast
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Aug 17, 2009 10:47AM gmp300 wrote:

Hello KarenVW, I just finished 4 tx of taxatere/cytoxin and I still have almost all my hair!!  Yeah!!  When I say almost all- I mean that I lost strands of hair after I combed it.  Not much more than when I brushed it all day.  No one can see a difference in my hair although I may have thinned a very litlle bit.  Iam very happy with my results.  Now that chemo is over I don't have to deal with trying to grow my hair back or wigs.  I look and feel normal.  Well Iam still fatigued from chemo and that's not normal!  LOL!!  Iam sure that all chemo drugs may have a different result and some may need longer post cooling than I had.  But the hassle of changing my caps and drinking water, and I also chewed on ice to ward off the metallic taste in my mouth (which helped) was well worth it.  I was a little cold but I dressed warm and it wasn't bad.  My head was like a brain feeze for the first 5 minutes you put the cap on but then goes away and you don't feel it anymore.  All in all it wasn't to bad and I would do it again.  It was only one day every 3 weeks that I had to do it.  If you need more info go to their website  Penguin Cold Caps or pm me.  Geri

Dx 3/23/2009, ILC, <1cm, Stage I, Grade 3, 0/3 nodes, ER-/PR-, HER2-
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Aug 17, 2009 01:51PM London-Virginia wrote:

Hi Geri - thanks for letting us know about this.  ~I am bumping this thread to help out our forthcoming September chemo thread - so glad for you that you had a good result.

best wishes -

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/25/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 6/30/2009 Chemotherapy 10/4/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/4/2010 Breast
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Aug 18, 2009 06:21PM makingway wrote:

I have been helping a woman with the Penguin Cold Caps. They are working! She has kept her hair. There was a spot at the base of her neck where the cap wasn't tight enough the first time we used them, so, she did lose a little there, but overall she has all her hair! And most of all, she doesn't look like a 'Chemo Patient'. Here is a link to the website if you are interested in keeping your hair while doing chemotherapy. http://www.msc-worldwide.com/index.html

Visit my website for helpful tips when using cold caps:penguincoldcap.wix.com/help Dx 3/2/2009, ILC, 4cm, Stage IIB, Grade 2, 1/19 nodes, ER+/PR+, HER2-
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Aug 19, 2009 02:51AM London-Virginia wrote:

This is great Makingway - thank you very much.

warm regards 

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/25/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 6/30/2009 Chemotherapy 10/4/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/4/2010 Breast
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Aug 19, 2009 02:57AM London-Virginia wrote:

Taken from another post, here is info on one type of cold cap treatment top give you an idea of how it works 

http://www.msc-worldwide.com/index.html

Virginia. Dx 5/9/2009, IDC, 2cm, Stage IIB, Grade 3, 1/2 nodes, ER+/PR+, HER2- Surgery 6/25/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Hormonal Therapy 6/30/2009 Chemotherapy 10/4/2009 Adriamycin (doxorubicin), Ellence (epirubicin), Fluorouracil (5-fluorouracil, 5-FU, Adrucil) Radiation Therapy 1/4/2010 Breast

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