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Hey.. was just browsing reddit and saw your post. I am a recent cold cap user and success story. Hodgkins lymphoma stage 4B. 12 treatments.
I am busy at the moment, but will be back to update my post. Feel free to PM me questions in the meantime .
Btw.. I'm a 24 year old female.

Update: Some background info.. I was diagnosed with HL stage 4B in April 2014. I got 12 treatments of ABVD starting April 21st and finished my last treatment September 25. I used cold caps for every treatment except for my first one. (I didn't find out about them in time).

Like you, I didn't want to lose my hair either. So I turned to the Internet to see if there was any way to save it. After I discovered cold caps, I asked my doctor about them. He had heard of them before but wasn't really too familiar. But he said they would be fine to use if I wanted. He was skeptical about whether they would be successful though.

I am sitting here, almost one month post chemo, with a full head of hair. I will note that during chemo, I never fully lost my eyebrows, eyelashes, or body hair. Everything definitely thinned, but I still had to shave my legs and armpits. So I do believe that my personal reaction to the chemo helped with keeping my hair, but I still think the cold caps definitely contributed as well. Also, I had very little side effects from the chemo at all. Just a little more tired than usual. I consider myself very fortunate.

So regarding the cold caps and supplies I used (I'll link everything below - so you can see prices and how I did everything).
Let me just say that this is a very very big commitment. Here is a brief overview on wearing the caps.
You pretty much need at least 2 people to come to every treatment with you. Or at least have someone strong enough to wheel the cap cooler in and out (it's pretty heavy). Caps need to be worn and changed every 30 minutes for 9 hours on treatment day. Start wearing caps one hour before, during, and 6 hours after the infusion process is over. I basically started wearing the caps at 10:15am, chemo infusion started at 11:15am, chemo infusion finshed at about 1:15pm, and i finished wearing caps at 7:15pm. It's pretty much a cold miserable process in my opinion. Not many people can take it. But if it's worth it to you to save your hair, you get used to it. I did anyway.
I had my mom and stepdad helping me with the cap process.
The night before treatment, my stepdad would go to our local grocery store and buy 60 to 70 lbs. of dry ice. It's not cheap. About $1/lb.
Then him and my mom would break up the ice so it can properly fit in the 110 quart cooler we bought.
The 6 caps need to be carefully placed in the cooler with the ice to maintain the dome shape of the cap so they fit on your head nicely on chemo day. There is a video on YouTube that shows how to do this. I can try and find it if you're interested.

Here is a list of everything I used. We picked up a few tricks along the way.

Supplies Needed:

-6 caps
http://www.amazon.com/Elasto-Gel-Hypothermia-Cap/dp/B000YC9LOU/ref=sr_1_1?ie=UTF8&qid=1405016864&sr=8-1&keywords=cold+caps

-110 quart cooler (the larger size makes it easier to fit ice and not crush caps bc it is important for them to keep a dome shape for your head)
http://www.academy.com/shop/pdp/igloo-maxcold-174-glide-153-110-qt-wheeled-cooler/pid-255753?color=Blue&N=933739034+933739035+933739033+349792019+4294965825

-Velcro straps to tighten caps to head (purchase at Walmart in the craft section)
http://www.walmart.com/ip/Velcro-Stretch-Strap-Black-2pk/17190454

-About 70 lbs of dry ice each time. It is usually sold in 10 lb increments (some local grocery stores carry it or sometimes Walmart) A portion of it will need to be chopped up and placed into 6 doubled up grocery bags to be placed inside each cap inside the cooler. The remaining slabs are placed in thin boxes along the walls of the cooler.

-Gloves to handle the dry ice.

-Spray water bottle to wet hair before putting into pigtails.

-Plastic shower cap to be worn under caps to protect hair from pulling when switching caps.

Also, here is some additional advice I have have to help with the process.

I used and still use Nioxin Hair Care products in system 4. This stuff is pretty gentle and promotes hair growth. http://www.amazon.com/Nioxin-System-Cleanser-Therapy-Treated/dp/B002O0D8P8/ref=sr_1_1?ie=UTF8&qid=1405019104&sr=8-1&keywords=nioxin+system+4

I didnt use a hair dryer and rarely used heat products. I washed my hair with cool water, usually about twice a week. Im used to washing my greasy hair every day, but the chemo pretty much stops a lot of the oil production in your body, thus a dryer scalp.
I also tried to brush gently as possible as to not tug on hair. On the days you wash your hair are the days you will notice the most hair falling out. At first first it freaked me out and I thought the caps weren't working, but it's normal to shed. At the end of the whole process, no one can tell a difference in my hair anyway.
One last tip is to make sure not to make the caps too cold. We didn't buy a thermometer to monitor the temperature, but probably should have. Just be careful with the crown of your head because this is where the caps give the most pressure and you can possibly get frostbite in that area.
There should be directions that come with the caps to advise you on this point.
This is all I can think of for now. Feel free PM me with any questions.

Edit: I thought of a couple more things after reading your other posts. Unfortunately, I did gain 20 lbs. I was 125 pounds, 5'6 and am now a little above 140. So that sucks. I'm working on losing it now. Only reason I gained it was because was eating A LOT! You don't just gain for no reason. Oh and I also wanted to mention my port placement. I know a lot of people get it in their upper chest, which seems to be the most common. I didn't exactly like the idea of having a scar above my boob though, so I asked the doctor for another option. He said I could also get it in my upper, inner arm. Which is what I did. There is a small bulge and scar there. The port is about the size and shape of a Dove Chocolate Promise. But it's pretty well hidden and most people can't see it.

Yes, you need a support group, and so does he. Sending you both big hugs. I wish there were more I could say or do to help you...the one person who comes to mind if you don't know her work already is Pema Chodron, whose book "When Things Fall Apart" has been very helpful to my good friend with terminal cancer. You might find it comforting. http://www.amazon.com/When-Things-Fall-Apart-Difficult/dp/1570623449

bring yourself. a lot. a large majority of friends can get cancer fatigue (speaking from experience) and sometimes don't come around as much after the initial shock has died down. just showing up consistently and being there will show how much you care. just keep showing up to laugh. play cards. watch movies. my friend brought me this book i was pretty touched by it.
edit: the book is about wanting to get a really good gift for a good friend

I had Burkitt's - in remission.

In addition to here (we're nice, really!). LLS has a website and lots of info, too, as well as online (and offline) support groups.

http://www.lls.org/

Regarding chemo I always recommend this. I have no connection to the authors. I found it helpful

http://www.amazon.com/The-Chemotherapy-Survival-Guide-Everything/dp/1572246219

The Hodgkin's chemo is extremely unlikely to cause any long-term fertility damage. The 2nd line chemo (which hopefully you won't have to get and which most people don't need) can. You may want to consider fertility preservation.

NOW is the time for you both to investigate alternative cancer treatment.

To fight cancer the body needs the right nutrition, removal of toxins and irritants, and therapy that's non-toxic to normal cells. Standard treatments are not wildly successful and can actually cause new cancers; they also disfigure and/or destroy the body and its immune system, making it harder for natural remedies to work if they are tried in desperation when conventional treatments fail, as they frequently do.

The first step your family should take is to move to an alkalysing diet that emphasises fresh (and mostly raw) pesticide-free (organic or biodynamic or home-grown) vegetables and fruits. Carrot and beetroot juices every day can be beneficial. Any meat should be not the largest portion on the plate and very lightly cooked or eaten raw (e.g. sushi/sashimi, or steak tartare), to preserve the enzymes it contains (this is important as protein-digesting enzymes are needed to fight cancer cells. If you cook meat through, all its enzymes are destroyed and the body has to supply all the enzymes to process it, diverting them from the cancer fight).

An important nutrient linked to preventing breast tissue abnormalities is iodine. Many are deficient in this substance: besides not getting enough in the first place, it's also displaced by other halides such as fluoride, chlorine (both of these in drinking water), and bromine (the latter is used in bread production). The best dietary source is kelp, or seaweed. Japanese women who eat their traditional, kelp-rich diet have one of the lowest rates of breast cancer in the world. Check out Iodine: Why you need it, and why you can't live without it by Dr David Brownstein.

Your family should also move to eliminate refined carbohydrates from your diet. No more sugar, bread, pizza, white rice, pasta, cakes, biscuits/cookies, muffins or other flour products (the book Life Without Bread is very good). Cancer feeds on sugar; cancer cells have more insulin receptors than normal cells, and they can also make an insulin like substance that allows them to absorb up to around 15 or 16 times more than a normal cell. This fact can be used in various ways, including IPT and PET scans in the medical world, and is used in the alternative therapy world too (fruits like apples and apricots have sweet flesh with bitter seeds which contain an anti-cancer substance called amygdalin (aka "vitamin B17"); there is also a maple syrup + bicarb therapy (important to take magnesium too with this, so you don't upset your calcium/magnesium balance).

Avoid anything containing soy, as most commercial soy products are unfermented and thus will block iodine absorption as well as protein & mineral uptake. Avoid anything containing high-fructose corn syrup (HFCS). Avoid artificial colourings, flavourings (including MSG, year extract, hydrolyzed anything), and artificial sweeteners. Do not cook with polyunsaturated oil - it is fragile and oxidises readily under heat or light. Monounsaturated oils are best for salads, and saturated fats are far more stable under heat and are the healthiest to cook with. Don't use margarine - butter is better (also contains vitamins A and K2).

Cod-liver oil is an important source of vitamins A & D, which work together. Vitamin D is essential for proper immune system function; your wife needs hers in tip-top condition. A warming sit in the sun every day will allow the skin to produce vitamin D (sulphur and cholesterol are needed for this reaction; eggs contain both of these things). In the winter, or if indoors for extended periods, cod liver oil is essential.

Vitamin C in large intravenous doses has been shown to be effective in attacking cancer in a way that is non-toxic to normal cells. Taking vitamin C orally can help, but it's not as effective as the intravenous method. A good vitamin C formulation will contain bioflavonoids, and will balance calcium with other minerals such as magnesium and potassium, like this one. That brand also contains zinc, which is an important mineral if you are going to be using amygdalin (vitamin B17) therapy.

Websites to help you start your research include: Gerson.org, Cancure.org, CancerTutor.com. An excellent book enumerating a number of alternative therapies is available from CancerTruth.net.

Documentaries that you will find helpful include: The Gerson Miracle, Food Matters, The Beautiful Truth & Dying to Have Known (online here; 1hr 19 min), Healing Cancer from Inside Out, Burzynski: The Movie, and the excellent new 2011 film Cancer is Curable NOW (you can find them on Amazon.com & elsewhere).

Don't despair, there are better methods to try than the drastic and barbaric conventional ones. Don't let orthodoxy awe you with impressive terminology, play upon your fears, and tell you everything but their advice is "wrong" in order to quickly usher you into their agenda. Cancer is not generally going to cause someone to drop dead suddenly: take a week or three and do some thorough reading and research. Get an idea for what is available before making a treatment choice. Meanwhile, you can start changing your diet today: everyone in the family will benefit, not just your wife!

http://www.amazon.com/Prevention-Oncology-Mouth-Rinse-16/dp/B002J7HNLQ/

I bought this stuff based on my research and it really helped me. I was never in as bad a position as you are. I just felt like I had eaten too much captain crunch and my mouth was tore up. It helped right away and over a few days started making more of a difference.

It's not expensive so I really think it's worth a try.

Good luck.

Try here. They have some dressier 'newsboy' type hats that aren't bad and some slouchy berets but you have to sift through a lot of froo froo turbans and girly stuff to get to them.

Also just google for "slouch beanie". I was able to find a lot of unisex ones from casual to kinda dressy. Ultimately, I ended up buying mine from Amazon and I used the same search term. Kinda like this and this but there's tons of different styles.

edit: things

It's called Help Me Live: 20 Things People with Cancer Want You to Know. I must've bought around 5 copies for people in my family. I thought it was extremely helpful! :)It's cheap on amazon right now too, if you buy a used one.

Help Me Live

My mother died on May 2. So far, I've found that the anticipatory grief (what you're going through has a name... somehow I found that a little reassuring) was far worse, or at least more debilitating, than the grief since she died. That's not to say the present hurt is weak; it's just far different than I'd expected.

So, here's the deal. There are no expectations you need to place on yourself. There are no rules. There is no really telling grief how it should be. Grief is a selfish, painful, intrusive beast that takes over parts of your brain and heart, your attention, your energy, your will. And grief is important. You are processing it, I promise you. And the only wrong way to deal with grief is to try to ignore it or suppress it; that'll only make it hurt more in the long run (that's my theory, anyway).

If I were you, and if it's possible, I would start (or maintain) communicating with her care team at least weekly - however often they see her. Your mom will probably (rightfully) need to give them permission to share with you. In my case, they were very correct in telling me when my mom was months, then weeks, then days, then hours away, even though I fought them on most of it (I suffered from some serious Daughter Denial, although I was convinced I was being logical at the time).

Your mother is suffering, but it sounds like she's found peace with this - something that may come and go for her. You are are suffering, too. Our parents' mortality is incredibly hard to come to terms with - it's the toughest thing I've ever faced. I hate that any of us go through this, and my heart really goes out to you.

I would ask if there's any way possible for you to go to your mom's, with or without your family, to be with her for a little while. A week maybe? This is a very strange and special time; I don't know how to say that without sounding weird or morbid, but my mom and I had conversations in those last months that will never leave me. They were beautiful and heartbreaking and hilarious and ... just extremely special.

There were some books that helped me: Living at the End of Life (both my mom and I read this), The End of Life Handbook, and Nearing the End. They're not particularly religious or metaphysical - really straight-forward reads, and very informative and helpful. I didn't read any of them cover to cover; I just picked chapters from the Table of Contents when I needed "advice" on a particular topic.

I don't know if this rambling is at all helpful to you, but if so, please feel free to PM me anytime. This sucks, it's awful, and the grief cannot be stopped. But there are moments in this where you will stumble across something very meaningful and special. It's weird.

It's in nearly every supermarket. I think they go for $8-$10 for a six pack in stores. There are always coupons for $1-$2 off somewhere.


http://mobile.walmart.com/ip/Ensure-Milk-Chocolate-Nutrition-Shake-8-fl-oz-bottle-16-count/12166808


http://m.ensure.com/product/ensure?q=ensure


http://www.amazon.com/gp/aw/d/B000052XAI?pc_redir=1398267182&robot_redir=1

I believe the canonical text on the current understanding of cancer is Weinberg's The Biology of Cancer which is really fantastic. If you can get a hold of a copy you might try working through that book. Don't get discouraged if it goes over your head repeatedly -- just being exposed to the jargon goes a long way to obtaining understanding.

Good luck!

It's easy to fall into this mindset, because our brains are wired to simplify complex topics. And here, the mistake is thinking that "Cancer" is some monolithic disease that can be understood and combatted with reasonable effort.

Unfortunately, cancer has been described as thousands of diseases with one label. The complexity is simply stunning, requiring expertise from genetics, physiology, pharmacology, immunology and many other disciplines to even grasp the bare essentials.

A fantastic book that will give an overview of the history of cancer treatment and the processes involved is "The Emperor of All Maladies".

In answer to your question of whether or not the diet would be worth a shot.. i would answer with "if I could go back to before I did chemotherapy, i would have done this diet instead". the reason why is a couple of different factors... well it all started when i was diagnosed with cancer and my dad started doing research as to what causes cancers. he didnt read this book, actually we just discoverd this book but ill explain how i found it in a sec. So my father was doing research and he came to the conclusion lack of nutrition is what causes cancer. TBH i was not sold on the idea at all and i chose to have chemotherapy. (i was 15 and for some reason the legalities were up to me). well i had chemo, was healed of cancer, and since then have been ok. well about a few weeks ago this woman went to have her car repaired at the body shop where my dad works. this woman was a *ahem "female priest" or something like that so you can imagine how very outgoing and talkative she was. she got talking to my dad, and crazy enough, she had hotchkins lypmphoma(or it might have ceen non-hotchkins) but nevertheless, her cancer was alot more advanced than mine was. mine was a stage 2 and hers was stage four. she had many surguries. She had cement poured down her spine, and she had as her docter put it "every possible body part removed without killing her". so the docters said there was nothing else they could do and basiccaly gave her a death sentence. She then explained that she wasnt going to give up and began looking online for any hope of living. she found this book. she followed the diet to a T, and after 3 months of this strict diet she was cancer free!! now i was never sold on the idea but actually meeting someone who did the vegan diet to cure themselves of cancer convinced me. Now understand there isnt anything special about this book but it is one of many that can give good direction. http://www.amazon.com/Natural-Strategies-For-Cancer-Patients/dp/0758202210