Starting chemo August 2017 - would love some moral support!

MakeupLover

thanks ladies for the constipation suggestions. Will give them a go!

I’m having back pain now due to taxol. Usually occurs on day 3

PauletteK

MakeupLover - Taxol gives out joints pain, I got that on my knees down. I take L- glutamine powder 30 mg for 4 days. Do you take B6 and b 12 for neuropathy?

Blair2

Hi Girls, I'm coming out of no where here as a person making up her mind on chemo treatments, and I wanted to catch those of you who were at the finish line of their chemo. First - Congratulations! Including those half through! I couldn't help but notice that some of you were given herceptin Why the steroids? What is it for, or do in addition to the chemo drugs? Is it for just HER2+? I have a heart condition, so I know I can't take it, but I don't understand what it's for or why.

I was told by my MO that I should have 4 rounds of taxol and cytoxan - I'm 68 - any of you with the same DX say it's not as bad as they thought now that you are at the finish line? Just trying to get some confidence or bravery into this hell hole!

sweetp6217

I had a bit of neuropathy and edema with my fifth infusions. Also, they had to postpone my 6th and final infusions (for a week) because my platelets were at 80. Next Thursday, if the bloodwork comes back O.K., I'll be able to complete the chemo. My taste buds are near perfect right now, but should be near the worst for Thanksgiving. At least I have Thursdays off and can postpone Thanksgiving a bit. Haven't shopped yet either; maybe there will be some after holiday sales

PauletteK

They put steroid in the IV so tune down the allergy of the drugs maybe other has better input. Steroid give me some energy and appetite it helped me for few good days. So you can’t take steroid at all?

Cherry-sw

Blair2, take s deep breathe, you are going to be fine. I see you are not Her2 positive so you can forget about Herceptin. The steoroids are given before the infusion to protect your body from the drugs, they eventually will disappear in a couple of days and by then the drug is also starting to leave your system but this is usually when you start experiencing the SE. It sounds you will be doing dose dense Taxol with addition if Cytoxan, there is a thread called weekly Taxol, some people there did dose dense you can post there. Cherry

Cherry-sw

It has been quiet here, how are you all doing? I found out my first infusion of EC will be on 27th so I will have two more weeks to catch my breathe, I have to admit that I need those, the last Taxol has been hard too, I really tried to stay up but eventually found my way into bed, watched some movies. Since I have been hanging on this forum a lot we start eating more American cuisine. I mean I know how versitile US cuisine is. I am not one of those arrogant europees who would say yankees only eat burgers, I own Jamie Oliver’s Jamie’s America, but there is so many things I never heard of, like people mentioning Salisbury steak, I had to google it, or the difference between yeasted and cake doughnuts, I had no idea. Or achiote and annato seeds, now I have them in my pantry. And I love Serious eats website. Today I baked Boston Cream Pie, here comes the picture. The recipe from browneyebaker, the best custard I ever made. The cake looks a bit messy but that is because I made too much ganache and I just let it run.

PauletteK

Blair - I belong to weekly taxol , I take B6 and b12 for my neuropathy, if you do DD you might get fatigue on your second dosage. People have joints pains in different part of the body, I have it on my knees and legs. I used to have mild constipation, now turned into mild diarrhea. And I have mild mouth sore on the end of the treatment, but nothing really bad. Worse is neuropathy for me, so I have to stop at treatment 9.

Sweet, my wbc is getting close to the bottom also, glad I made it to my last infusion, now I’m hoping my wbc goes up so I don’t have to worry about infection.

Blair2

Thanks ladies for all the info about Herceptin - I just was just curious and because of my heart disease, I knew drugs that ended in “mycin” or “mab”, were bad for people with heart conditions. The steroids threw me off.

My planned treatment is 4 rounds of the taxol and cytoxan every 3 weeks for a total of 12 weeks. I have to be bald for this? Oh! So is weekly taxol a more intense treatment given every week? What is Dose Dense or DD? (I feel so stupid and lost.) None of my doctors ever explain anything in detail (no time I guess), and I do read a lot, but it’s confusing when there’s so many of us with different, but close cases.

Cherry-sw - that cream pie looks scrumptious!

Stage2ire

blair2..DD means it is given every 2 weeks rather than every 3. Steroids are given to prevent allergic reactions to the chemo.

I had AC so lost my hair. Im not sure about your chemo protocol and whether hair loss is guaranteed. If you really wanted to try keep your hair you could consider a cold cap.

Blair2

Thanks Stage2ire. That makes sense. Then I should bare the 4 rounds fairly well I think - I really dread this. I was told without chemo I had a 1 in 5 chance of cancer elsewhere to reoccur. 1 in 10 with the treatments. (Including radiation and hormone therapy). I’m leaning towards doing it, but just dread it.

I have no idea if they offer a cold cap at my cancer center. They’re suppose to be up on things, but I’ll have to learn more next week at the Side Affects meeting. Do you ice your head at home too? You know, I sort of feel like we’re guinea pigs in Dr. Frankenstein’s laboratory going through all of this. Cancer is so evil

Stage2ire

i didn't use a cold cap, but from what iknow its only worn during infusion and isn't always guaranteed to save your hair. Losing my hair was emotional but I don't really think about it anymore. I got a wig but haven't worn it, just hats and scarves for me.

Chemo isn't easy, but it can be done. One day at a time. Im 39 with 2 kids under 5. If this comes back I need to know I tried everything. I still have a 20% chance of recurrence even after treatment. It's hard but I try focus on the 80% chance of getting out of this!

PauletteK

Blair’s - go to cold cap thread there is so much info there. I have seen one of the lady in my infusion center did that she actually brought her own. She needs to change it every 20 min. With taxol you might need to worry about neuropathy because they will damage your hands and feet. I actually ice my hands and feet I g during my taxol time. You might need to find out would you react on taxol infusion and you won’t know until you start your infusion. My taxol infusion time is 3 hours long since I have reaction. No fun.

Cherry-sw

Paulette, aren't you done by now? When was/is your last infusion?

PauletteK

Cherry - yes I have my last infusion yesterday! Yeah!!!!

Blair2

Congratulations Paulette - now the worst is over!!! Great photo - looks like they gave you a fun celebration. YOUR’RE FREE from chemo!

PauletteK

No bell to ring there but they gave me Pom Pom!

I still hang around here, can’t kick me out yet.

Willow22

catching up on replies to all you wonderful ladies -


Makeuplover - man, you are dealing with a ton of side effects! I hope things have gotten better for you since your last post!


Blair2 - welcome! There is so much to learn as you go thru BC diagnosis and treatment, and it can be overwhelming! We're here for you and are happy to answer questions and share tips . I had 4 rounds of Taxotere and Cytoxan, 3 weeks apart for a total of 12 weeks and finished about 6 weeks ago (doing radiation treatments now). I'm thrilled to be finished, but even though I had some side effects, it was not nearly as bad as I was afraid it would be. Im 55 and in good health although not as fit as I would like, but I also am retired and don't have kids to take care of (other than my fur baby, Kirby).


There are some really informative links under the chemo heading on the breast cancer.org menu page (especially the "shopping list" for chemo had some very thoughtful suggestions for small things that were really handy to have around).


Doctors and your infusion clinic may not mention cold capping - it really depends where you are located and what their experience with it is. My MO recommended it to me, and I was very dubious to begin with (I hate being cold), but I was very worried about the small possibility of permanent hair loss with Taxotere. I ended up renting Penguin cold caps and am glad that I did, although like most ladies, I shed a large amount of hair during the 12 weeks of treatment, and am still loosing hair at 6 weeks out (probably lost 50% of my hair so far, but no bald spots that show, and my new hair is about an inch long). For my hair type and chemo meds, I capped 50 minutes before the infusion started, during the 2 hours that my meds were infusing and then 4 more hours at home. I was pretty zonked with the IV Benadryl given along with IV steroid and anti-nause meds before the infusion, so my hubby was my cold capping King. He changed the caps every 25minutes, and rotated the 4 caps on dry ice in the cooler so that each was ready when needed. Some infusion centers offer the dignicap or paxman system - their staff applies the hat which is connected to a machine that keeps it at the correct temp. The cold capping discussion board has tons of info, and I am happy to answer questions - send me a private message if you like. I am very happy they talked me into it, but I am also glad that I only had to do it 4 times.

SweetP - I hope the neuropathy goes away and your platelets bounce back quickly! It's a bummer being delayed when you are so close to being done, but it sounds like your body really needs time to heal.


Cherry - glad you've come to a decision about the EC.... I think deciding can be the hardest, most draining part (it was up to me whether to do chemo at all or just go with radiation, and that kept me up a bunch of nights because who chooses to do chemo??? But even my hubby agreed it was the right choice for me, and knock on wood none of us have to go thru this again!). Your boston cream pie looks amazing!!!! My husband is actually in your beautiful country right now for work - training in Lindesberg, about 2 hours west of Stockholm. I asked him to bring back some yummy looking things from the grocery store (lingonberries for sure!). Any other goodies I should have him look for?

Paulette - CONGRATULATIONS!!!!!! 🎈🎉🍾. .... well, maybe not the champagne bottle just yet, but I'm so glad that you are DONE!!!! Take care of yourself for the next few weeks - I didn't bounce back as quickly after #4 as I did with the first couple treatments, although you have been much better about walking during chemo than I was. I think you said you will be doing radiation too.... I am halfway through my 6 weeks and it's gone by quickly with only a little skin irritation & itching so far.

Hope everyone has a great weekend!
Willow

Cherry-sw

Willow22, glad to hear from you. I really hope your husband will make a trip to Stockholm, this is not a best time of the year to visit Sweden, but I see that he is alongside Mälaren's shores, very beautiful surroundings and a lot of old castles in vicinity. About the food, if I remember correctly one canno bring any food into US? I visited US twice and both times one could not take as much as an apple from the plane. Otherwise, I highly recommend for him trying seafood, our Northern Sea shrimps in particular, there is something called Skagen röra, it is a creamy sallad like a spread with shrimps. He will not be able to take it with him but he can taste it and later I can find you a recipe, it is amazing. If he still can take anything with him to US, he can ask for chocolate dipped oatmeal cookie, it is called choklad doppad havreflarn. This is not a cookie you are used to, they are lacey thin, crispy and can either be dipped in chocolate in one side or just be as they are. Lingonberry jam is also an option, otherwise I am trying to think of anything that does not require refridgeration and cannot think of much. Now it is possible to purchase the spices for Swedish glintwein called glögg so you can add it to the whine at home, one has to cook it with it and taste Swedish Christmas glögg tradition. Cherry

Cherry-sw

Paulette, yay! In a week or two you will feel like s new person. I am actually looking forward to not having any infusion on Monday and want to ser how I will feel in a week. I am not looking forward to EC, my hair will be gone again but I decided I will stop if it will be to hard. I am following a blog of a young woman who finished EC and weekly Taxol in April and she at the moment has two Ingves long and thick hair so it should be growing fast eventually. Cherr

Blair2

Thanks Willow for keeping the faith for me and for the cold cap info. I did look at their site, and it’s a little too pricey for me to rent the caps. I think I can deal with the baldness. I’m in FL and at least while I’m bald, the weather will be on the cool side. We never have freezing temps. My sister and I have looked at wigs. (She’s not here in FL, but wants to buy me a wig) but I think my head is small/average, and I bet I’ll have trouble with fit. If the timing was in the summer, I’d sweat under anything (scarves, hats or wig), and that would be bad. What I plan to do is have my hair dresser give me a buzz cut, then I can tolerate what falls off from there. I’m sure she might have to trim the wig a bit. What a pain.

Still afraid of the unknown side affects. I’m afraid of permanent side affects at my age.When the fatigue sets in - are you really laid up for days, or just a couple of couch potato days - then just run down off and on? I realize no one can predict how I will feel, but I like hearing all the ways people go through it. Willow - what treatment had the worst side affects?

Cherry-sw

Blair2, I did not considered doing cold caps, I just thought that it was not so important but losing my hair became more of a big deal than I thought it would be. In retrospect I probably should have given cols capping some more thinking. I had long wavy hair to the middle of my back, my wig is almost identical with the hair I had. When I found out I will need chemo I cut my hair short, when I look at my wig or toher people's hair I miss mine, I do not wear wig too much, but on the other hand it is cold where I am and I am going in hats, I am not in US, I am in Europe.

There is, as I mentioned, weekly Taxol thread and i believe a user name Castingame did dose dense Taxols, you can ask her about the SE. I did weekly Taxol and I have not experienced any fatigue until I was half in in my treatment, the effects are cumulative. The last three treatments I needed a nap in the middle of the day. The best way of dealing with it is actually get out and walk, one week I stayed mostly at home and it was really one of my worst weeks. This week I tried get out of the house even if I ended up laying in bed or grasping for coffee afterwards, still was feeling better than staying at home. Do you know whether your tumor had LVI and what was your Ki67? Did they do any Oncotype for you?

Willow22

cherry - the US customs forms for declaring food items is scary looking, but you are allowed to bring in most packaged items. Fresh fruits and vegetables depends on whether they are packaged to import or could be from someone's garden with pests (same goes for me bringing fruit over the border into Canada), and some meats are not allowed (sadly they took the cured sausage I brought back from Spain). When I travel, I love to browse a local market for spices and regional goodies, along with fresh foods for a picnic - and I usually meet some really nice people who tell me what things are and how to prepare them.

Blair, your doctor and the side effects class will give you the best info and be able to answer specific questions for you, since they will also know which medications your doctor uses as pre-meds and to treat side effects. Both of my chemo drugs can cause nausea, so I had Aloxi as an IV premed - it is a long-acting med (48 hours) to prevent nausea. I also had medications to take in case I still felt nauseous (and I used those in addition to the premed). There are several meds that can be used, so you may have something different.... just be sure to prevent nausea as directed or treat it early on. It is something that is expected, and it is much easier to nip it in the bud rather than try to get on top of it after it has become moderate to severe. The same goes for other GI side effects - most ladies have had either diarrhea or constipation (referred to as big D or C if it's bad), and again, staying on top of it and taking action early on is way better than waiting till it is severe. Your doc will have recommendations on what to do with both of those, and the ladies here have had great suggestions too, as well as good ideas of things to eat or drink to stay hydrated and get some protein during those first few yucky feeling days.

I found the fatigue to be cumulative - I was a couch potato for the first 2 or 3 days after my first treatment, but was pretty normal feeling by about day 6 (day of chemo = day #1). By the 4th treatment, my blood counts weren't bouncing back as well so I was (and still am) a bit anemic, and I was a couch potato for a lot of the first week, and still easily tired and often taking a daily nap in the 2nd week too. I had some low grade fevers and went on antibiotics 3 times, and that could've been a factor too.

It sounds overwhelming, but it is all manageable and you can do it! I wish I had been better about walking a little bit every day, even if it was just up and down my block - studies show that helps with chemo fatigue. It's also really helpful to keep a little journal of your side effects and what you did about them, along with anything you want to remember to do next time.... I found it hard to remember the details otherwise.

Chemo was not nearly as bad as I was picturing it, and your MO and clinic staff are there to support you and help you manage the side effects. If you are having a problem or are concerned about something, call them! I've called during the day, after hours and on the weekend, and it was a wonderful to get reassurance and help without having to wait for business hours.

Do you know when you'll start?
Willow

Blair2

Cherry- no lymph invasion out of 5 nodes. Margins were clear on my tumor. They cut out a hyperplasia spot on my right breast. Doing chemo every 3 weeks, 4 rounds for 12 weeks total. Ki67 = 60%. Oncotype 27. I thought my tumor was large at 2cm, but all the doctors claim it was early stage, but if it had spread to nodes, I’m sure it would have made it to Stage 1B or maybe Stage 2. My Grade was 2 - then post op 3, so this is aggressive I guess. Chemo is only a preventative measure for reoccurrence

You are wonderful for guidance Willow! (Everyone else too) I appreciate what you are telling me as the approaching day will be like jumping off a cliff for me.

My date for chemo is tentatively set on the 21st - no plans for Thanksgiving. That will probably be the worst day too - so may push this up a bit. This is my next week schedule:

Eye doctor tomorrow (running out of contacts).

Dental cleaning Tuesday morning.

Thursday a visit with plastic surgeon (will find out what’s up with my “pointy boob” issue). I’m hoping it’s still just swollen (surgery was October 12). So it will be 5/weeks this Thurs. post op.

Later - the side effects class. I will have my list of questions.

Friday - medication discussion with oncologist.

I had the gut feeling I would need chemo ever since I saw that my Ki67 was high. My breast surgeon acted like I was over worried about it. Radiation was bad enough with heart issue that I made an extra appointment with the radiation oncologist just to make sure they used True Beam machines that avoid the heart area. I have little trust in things and I worry to keep myself atop of things. It’s just the way I’ve always been. I know it’s not good, but I can’t control it. Didn’t like bs’s attitude at all. She was so aloof about my whole case - could have cared less about my heart. I never had a doctor treat me like she did, so I hope I never have to face her again. She was supposed to be a good bs, but I found her to be very strange - at least personality wise. My plastic surgeon is nice (poor guy has to work with her). I shouldn’t vent about doctors, but my bs made me mad by some of her stupid comments. Never answered any of my questions or explained anything- because I worried too much. She made me worry more because she didn’t explain anything. Does any woman young or old not worry about a life threatening disease?

Anyway, sounds like the biggest side effect is feeling like you have the flu and just being super tired. I deal with joint pain all the time, and have for years. Hope I don’t have mouth sores. I could handle finger and foot pain. I just hate feeling nausea and fatigue. I also hope I don’t have breathing problems like I did with the anesthesia, but none of the doctors seemed to think that was any big deal. I’m not talking laboring with breath - it’s a weird feeling like I have to force myself to take a breath. Will do lots of deep breaths prior to this and during. (Using spirometer - horrible on that thing!).

Cherry-sw

Blair2, your Ki67 indicates that chemo will be effective since it hits the cells when they are in the mitotic process. You may use salt and baking soda to wash your mouth, I did it all the time. It is doable. I have only done weekly Taxol so far, but I will start with EC, it is an anthracycline, I will have three infusions three weeks apart, not looking forward but my tumor had high Ki67 to. Cherry

PauletteK

Wow Willow you really good at the details 👏👏👏 you covered all the side effects, Blair what kind of chemo are you doing and when?

Cherry - my last chemo really kicked my butts today, I took my walk this morning and I Took a nap and still tired.Neuropathy really kicks in today also, I have to be careful walking stairs and my fingers are very numb. I hope I feel better by Wednesday I have a PT appointment.

Cherry-sw

Paulette, this was about after 9th Taxol I started to notice that the effect was cumulative. I remember I cooked dinner for my manager on Wednesday after my 4th Taxol, after the 9th I crushed every Wednesday, you are lucky to stop at this point, it really gets worse at the end. I told to myself that I will do two EC and if it will get unbearable I will bit do the last one. My Boston Cream Pie tasted really good. Cherry

PauletteK

Cherry your Bostom cream pie looked delicious! I think the next few days will be my down days. 😭😭

Blair2

Cherry - thanks for input. I just happen to keep a mixture of salt and baking soda in a little jar that I use to whiten my teeth with - mixed with a bit of hydrogen peroxide. I use it sparingly, but it will be ready.

Paulette - I was told last Thurs. by oncologist that I will be given taxol and cytoxan. Because of my heart condition, the chemo drugs ending in “mycin or mab” are no no’s for people with heart conditions. However - sounds like all the drugs are definitely potent on our bodies - ugh!

Cherry-sw

Blair, any drug that ends with ”mab” will be useless for you because you are Her2 negative which is a god thing. There is only one drug that ends with ”mycin” that being AC, substance doxorubicin, an anthracycline that even being known for its cardiotoxicity is proven to be the most effective together with a taxane in terms of disease free survival.