TRIPLE POSITIVE GROUP

Cherry-sw

Suburbs, you are right, no supplements while on chemo, I will try certain foods butthe chemo will affect even my taste, I do not know, no other suggestions from my clinic but to wait and see, I guess I just have to endure.

Suburbs

Hi Cherry-sw. One additional idea for swelling is water infused with cucumbers, lemon and parsley. I am not sure if 1.) infused water helped or 2. ) that the act of preparing infused water forced me to drink it and increase overall water intake helped. Either way, it can't hurt. Hope you get some relief

Cherry-sw

Suburbs, thank you, I am really good in drinking water, I have my tea with lemon by my side and then I just pour some more water into this 800 ml mugg and drink, drink, drink. I a few hours I brew a new cup and so on. What is happening right now has never happened to me before, by the evening I have a pregnant belly. I will prepare cucumber water before EC, everybody says that things start to taste funky, even water

ElaineTherese

Cherry-sw,

I'm a big tea drinker, too! But, remember that caffeinated tea is a diuretic. I limit myself to two cups of tea a day and drink lots of flavored water.

Binniebin

cherry, with your swelling you may be drinking too much. It's important to drink to flush the chemo and its breakdown out, but if you drink too much water you can dilute you bodies salt levels and so your kidneys will try and adjust. 2 - 2 1/2 litres of fluid per day is a good amount. So talk to your mo about how much to have. Hope you get some relief!

Cherry-sw

ElaineTherese, I delute my tea with so much water so eventually it turns into flavoured water, if it is diuretic then I shouldn't retain water, right? But I do.

HapB, my nurse says it is typical for Taxol weeks after treatment and that diuretic won't help.

Cherry-sw

Binniebin, I always drunk a lot of fluid especially tea, but never had any problems. I will count how much I drink per day starting from tomorrow. MO office says to hydrate yourself, they never said that drinking too much fluid can cause swelling

Lita19901

Cherry, it might be a good idea to check with your doctor about limiting fluids. Sometimes it's necessary to limit it, but it depends on the cause of the edema

Cherry-sw

lita19901, I will talk to the doctor before treatment tomorrow but since my creatinine values are fine my MO office said there was nothing to worry about if it does not get worse. I took measurements around my belly, things and ankles in the morning and in the evening as they said and have been laying down with my feet upagainst the wall for several hours yesterday, it is mostly my stomachthat swells, feet are no that much anymore.

KimCee

HapB. I agree with you. I knew about this, and it does make statistics not as truthful when we are looking at our numbers. It happened with my aunt. She had BC in the 80's, mastectomy and rads, 9 positive nodes....9...tamoxifen was her only drug. This oncologist must have not done well in college! Early 90's mets. She had such harsh chemo, was never with any quality of life, passed away, death certificate said nothing related to breast cancer. Same thing happened with my father, as far as death certificate having no mention of cancer.

I am not big on stats because I have fallen into the small end twice. I feel the big numbers in stats are not realistic and that is why so many of us are shocked when we do not fit inside the good, big numbers. Just my opinion

SpecialK

What goes on your death certificate is dependent on who fills out the paperwork - this is not necessarily the fault of oncologists. Which physician attends your death and has the authority to list cause of death, what information is given at that time, and how much detail is provided on the certificate itself all factor into how the following statistics are reported. The different geographic entities that issue death certificates all have a number of lines for reporting cause of death - some are pretty short. How cause of death statistics are compiled is the responsibility of the National Center for Health Statistics and SEER collects information from a number of sources, on both living patients and those who have passed away. It is important to note the distinction that if you die as a result of cancer treatment, the treatment is what killed you, not the cancer. The death is not a natural development of the cancer itself. You may have received the treatment because of the cancer but the cancer is ancillary.

hap - the video you linked is interesting but I am always careful to consider the source - this gentleman is an anti-chemotherapy crusader who sells his own products. He claims he cured his cancer with nutrition but he really cured it with surgery.

Dannajae

I haven't posted in a while so I'm jumping into it with an unrelated topic, but I've had 5/12 Taxol + Herceptin treatments, and the side effects are getting worse, but still tolerable. The hair loss caused a minor meltdown, even though I thought I was prepared, but the side effect that bothers me most now is that nothing tastes good. Yesterday I ate fried eggs and 2 English muffins and slept most of the day. Then I was really hungry at dinner and ate brisket and fries. When we got home, I became ill...my first time doing that since I started chemo. I then craved an orange (highly unusual for me), but it stayed down.

I know you've probably all shared a thread like this before, but what do you crave and what works for your diet? I've been craving salty and sweet. Also carbs, but bread tends to taste dry and rough. Disappointed that favorites like coffee don't taste good. I also seem to be constantly craving chicken broth.

Thanks for the tips. Xoxo

Cherry-sw

Dannajae, I finished my last Taxol three weeks ago, my taste was not affected, olive oil tasted little more bitter, otherwise it stayed the same. I also craved chicken soup almost all the time until probably 8th Taxol, then my hemoglobin value did not recovered as it used to and I craved red meat, liver, some products that contain blood like Swedish blood pudding, I never ate it before, tried once when I was very young. Now I eat a package a week, just fry it in the pan. In the beginning it was more carbs and sugar but now it is more protein, sugar too actually, this is how I gain myself 10 extra kg. Now I do not have any idea how to stop gaining and start kosing instead, but I suspect I retain water. The hair loss was hard, I agree, if I knew it would be so traumatic I would have done cold caps.Cherry

bjquilter

I haven't posted for awhile but now after 4th taxol I'm experiencing really bad acne and this morning my hair is really falling out. I haven't shaved my head yet because everyone keeps saying to wait until it looks bad. I've heard that my head will get more sensitive if I wait. is this true? I have also been gaining weight and craving everything. I don't know how to eat healthy anymore and feel so guilty for getting out of control.

KimCee

bjquilter...sorry to hear, but glad I am not alone. Unfortunately, I just had my 5th Taxol and am eating everything in site and a lot of junk. I loved junk before but this is so much worse. Last week after Taxol 4 my hair really started shedding a lot, so much so that I had it buzzed to 1 inch long. Previously on taxotere, I was completely bald, this time with Taxol, not yet at all. Wearing my wig, but do not need to wear a cap at home or to sleep. Hoping some remains on my head for the next 7 but not so sure.

My head did not hurt this time, but it is very itchy. Hope this helps to know you are not alone.

moodyblues

Dannajae. I ate many cans of baked bean soup, I was able to tolerate this throughout chemo. I ate alot of peaches and enjoyed peanutbutter sandwiches. Anything salty I couldn't deal with. I was unable to drink tea as it tasted terrible. When my platelets were low, I craved red meat and I am not usually a big meat eater.

SpecialK

hap - I get it, but it is possible to attribute a death to cancer caused by treatment if it is spelled out on the DC - if this is a concern for you as an individual, I would specify that this be recorded as cause of death. Tell every doc who treats you and get it in your medical records that this is your request, and tell your family members. What is recorded on the DC is actually very suggestible to what the attending doc is told by family. In many cases there are several lines, so causes of death can be multiple. Also, FWIW, you can spin stats any way you want - that is why I specifically pointed out his bias. Predict 2.0 was built on more recent stats, and I feel it is pretty reliable. Did you MO at DF run Adjuvent Online for you? Does Predict run consistently with any other info you have been given by your docs? Hearing loss is not better, but the ENT says this can take a while. I am not particularly hopeful and am now focused on finding ways to cope and move forward. It is what it is.

dannajae & bjquilter - I ate mostly bland foods and also craved salty - mainly because I could taste it. I would just try to eat what agrees and doesn't cause GI issues, and worry about eating healthy and/or losing weight after chemo is done. In the week before the next infusion (I was every 21 days with TCH) I ate a lot of red meat, even though it seemed carboard-ish, to try to keep my hemoglobin up. With weekly Taxol that is harder, but things like fortified cereal and Greek yogurt have protein and are pretty easy to tolerate. Melon tasted good to me and I also had smoothies. My one remaining vice is coffee and I found that instant Taster's Choice was tolerable - so weird. I ate potatoes in any form, but mostly loaded mashed potatoes, lol! That way I got some protein and the potatoes were mild. The weight you are gaining is most likely fluid retention. You have to eat about 3,500 calories and not burn it off to gain a pound - I definitely did not eat enough to do that yet I gained 15 pounds by the time chemo was done.

bjquilter

KimCee, Thanks for the feed back. I think I just have to go with the flow. Maybe get a little more exercise. Not knowing how much worse it may get is difficult but I'll enjoy the good days or moments and pray my way through the bad ones.

moodyblues

bjquilter. I buzzed my hair 4 weeks after starting chemo because my hair was just falling out by the handful when I showered. My thought was this: It was the only thing I had control over during my treatment for BC (when to do it, who would do it, alone or with family, how short to go etc) and I didn't want to wait to do it until I looked mangy so, as it fell out.... I buzzed it off!

I ate anything that I was hungry for during chemo, usually a tablespoon of this and a 1/4 cup of that. If it tasted okay I added it to my list of things to eat while it tasted good. I added Boost (chocolate) to help when I wasn't able to eat healthy. Baked Bean Soup-----OMGoodness it was my go to meal!

Cherry-sw

bjquilter, time between 4-6th Taxol is the hardest emotionally, I started with anti-depressive around my 4th Taxol. It is exactly as you describe it with cravings and gaining weight, just hang in there, listen to your body, take one day at a time, you will eat healthy later. And try to get out for a walk, it makes such a difference as far as fatigue is concerned Cherry

Lita19901

Hap, awhile back, on the Femara forum you said that you knew three women who had died from causes directly related to BC treatment. What were the treatments?

Dannajae

Cherry,

I don't even know what Swedish Blood Pudding is! I have the combined issue of food not tasting good as well as the texture feeling rough on my tongue. Everything tastes metallic.

I still don't think I would have tried the cold cap, but losing my hair was very emotional. I didn't even like my hair.

Lita19901

Hap, awhile back, on the Femara forum you said that you knew three women who had died from causes directly related to BC treatment. Which treatments

Dannajae

Hi bjquilter,

My acne (face and chest) started after my 4th Taxol/Herceptin as well, and my PA prescribed Doxycycline for it.

My hair started shedding after my 3rd. I had already cut it short, but once it started shedding, I went ahead and let the salon at the hospital give me a buzz cut and fix up my wig. I didn't have big clumps missing, but the hair everywhere was annoying. Now after my 5th treatment, the rest of the fuzz is starting to come out, along with the rest of the hair on my body. My head does feel a little itchy, but nothing bothers me as much as my taste buds and stomach right now.

I've had diarrhea off and on since my first treatment and am constantly battling dehydration. Last night I threw up for the first time. Tonight after dinner, I started to feel sick again and took an anti-nausea pill, which fixed it immediately.

All my symptoms are getting gradually worse, but so far nothing is intolerable. I'm just tired of feeling below par constantly...

Dannajae

Moodyblues,

My cravings have been very specific too: chicken broth, peanut butter, cookies, etc.

Dannajae

Cherry,

My PA said I wasn't her first patient who was shocked to gain weight during chemo. She said it was common to crave carbs and you should eat whatever tastes good. I shouldn't joke about it, but I was almost hoping at least chemo would make me lose weight.

Dannajae

SpecialK,

Thanks for the helpful info. What agrees and doesn’t agree seems to change daily.

Another unrelated symptom is body pain at night. I woke up in the middle of the night, rubbing my legs. My knees were throbbing. I took Tylenol and Ativan.

Finally, every time I blow my nose, it bleeds.

No single thing is horrible, but combined..

Tess111

Hi Dannajae!

As you can see. I did not take the same chemo as you are taking, but I did experience the dreaded metallic taste. It tended to get worse as the treatment wore on. I have two suggestions for you:

1. If you are using metal utensils to eat, switch to plastic. It helps.

2.My dear friend who had been through chemo 12 years before me sent me a book called, "The Cancer Fighting Kitchen". For metallic tastes the book recommends, "Add a little sweetener, like maple syrup or agave nectar and a squeeze of lemon. You could also try adding fat, such as a nut cream or butter."

I suffered from Big D and nausea for 16 of the 21 days that each round lasted. (I lost a LOT of weight.) On the days that I was able to eat, I craved Sweet and Sour Chicken – which makes sense in light of the books recommendation for combating a metallic taste. Another friend of mine only wanted bacon during chemo. (The thought of bacon made me shudder!) I hope this helps!

Tess111

PS I kept Peppermint Drops on me at all times because they were the one thing that would stop the nausea that would spring up out of nowhere. Some people say Ginger or Lemon Drops did the same thing for them, but for me Peppermint worked the best. Hang in there, Dannajae!

Cherry-sw

Dannajae, of course you do not know what Swedish blodpudding ls, I live in Sweden and even though it is quite popular I have not been eating it eithe before the chemo. It contains pig blood and is good for hemoglobin. Most people gain weight on chemo. Body pain is common for Taxol according to my nurse, and my sinuses get so dry that I blow crusts and blood. I started using nose oil and it got better, still crusts but less bloody Hang in there, focus on each treatment, you can do it Cherry

Binniebin

bj quilter, I had planned to shave when my hair began to fall out and then pop my wig straight on. Unfortunately I spent 6 days in hospital with feb neutropenia during my shedding time and due to infection risk I couldn't shave. So every time I touched my head or moved my turban or scarf my head hurt. It wasn't unbearable but I would have shaved if I could have. When most had come out I snipped the longer bits off ( looked like a mad woman with the wispy bits).

DanaJae, I found I didn't like my usual favourite foods and drinks. So I had a much bigger range of foods at home to choose from. Put less on the plate and ate 6 small meals. Also tried a salt water mouthrinse to stimulate taste buds. Anti nausea tabs 1/2 before eating if needed. Just managed as I could. After hospital my immune was still very low so I had healthy tv dinners which I really enjoyed. When things improved I eat healthy, ready for next chemo round!

Dry nose seems very common, I used nose oil at night made big difference and nose salt spray during the day.

Welcome to our group of supportive breast buddies, it's a wonderful haven , so good getting support and ideas from those in the same boat, just a shame that there's new people all the time.