Starting chemo August 2017 - would love some moral support!

Cherry-sw

Hi Willow22,

My onc told me that the icing does not prevent from neuropathy, it can only save the nails but I was also thinking about taking with me some ice for the mouth and then some blocks and for the nails. What kind of gloves are you wearing? Plastic or cotton? I will also take some towels with me thank you for the advise. Otherwise I am very nervous, trying to pull myself together.

Cherry

Clearpath

Hi - welcome new members!

Rebekah - I am on day 3 of 2nd AC. I found day 4 to be the low point but felt much better afterwards so hang in there. Second round has been similar to the first, but yesterday was the first day strands of hair began falling out in earnest.

I have been trying to take a walk of 3000 to 4000 steps per day (I use my Fitbit to track) - it only takes about 1/2 hour and seems to boost my energy. It's been hot though so I usually have to go early or late.

Would appreciate hearing what others MOs have said regarding the benefits of icing with Taxol - the explanation I received was somewhat vague.

My son made it up to college safely yesterday thanks to my daughter and her boyfriend -wish I could be there to help set him up.

ang006

Hi everyone.

Today is Day 4 after second AC. I feel ok, my biggest complaint is indigestion/heartburn. My stomach just feels off and I am very worried about constipation, even though I have been taking colace. I have been using the baking soda/salt mouthwash several times a day and so I haven't seen any sores yet, but my mouth is very sensitive.

Yesterday I was exhausted and very emotional. I don't know what is causing the emotional reaction (chemo, steroids, or just having cancer) but it has been tough. I have been walking every day (just came back from a 45 minute walk) to try to keep my body moving. I also am still trying to drink a lot of water.

I started losing my hair Day 13 after first treatment. To make it more manageable, I had a hairstylist friend come over for a "Hair Today, Gone Tomorrow" party. We cut my hair very short but in stages, so she got to play around with various styles (like a mohawk) that I would never actually get. The day of this last treatment, I cut it even shorter as it was beginning to come out in patches and hurt. It is basically a crew cut now and I am waiting to see what happens next.

My appetite has been good. I am craving salty things (like unhealthy pizza and burgers). I ate whatever I craved after the first treatment, so am trying to be more cautious now. I am eating a lot of toast and eggs and trying to get some vegetables in. I had been losing a lot of weight before my diagnosis so I really don't want to lose anymore.

Wishing you all strength and energy today.

Angela

rdeesides

Willow22 - must be the steroids wearing off. My dr put in an order for me to come get some IV fluids. Not sure what all is included in that, but maybe more steroids and Emend. Sadly, I think something got messed up with the scheduling so I dont see appt on my schedule, but I will call in the morning and hopefully get it straightened out. I feel pretty good other than just wanting to be in bed all day. Haha

rdeesides

Clearpath- I am now on Day 4 of Tx #1, so hoping tmrw is better. I think I freaked my husband out a little bit yesterday when I slept almost the whole day. I told him after today it would get better. I hope I'm right!

Sorry to hear about your hair. Inhad a wig fitting yesterday morning. I was hoping it would be fun, but it wasn't really. Should've taken my daughter or some girlfriends with me.

Do you have a plan for the hair?

Rebeka

Willow22

Hi cherry, interesting .... my doctor said icing can help prevent peripheral neuropathy, and the nurse I had for 2nd infusion told me the study actually had patients ice 15 min before start of taxane infusion plus 15 min after it's finished. I figure it's easy to do and worth a try. I used thin "runners gloves".... seems a stretchy, polyester material. I wore cotton socks and my feet were too cold so I added a hand towel between them and the ice block.I had frozen water in a gallon ziplock bag so it was a solid sheet, and it was too cold... next time I will just bring 2 bags of ice cubes for hands and feet. Most centers should be able to give you ice, but my infusion centers ice machine is broken right now.

I hope you are able to get a good night sleep tonight - waiting and worrying about what it will be like is exhausting and for me, it was easier once I got started!

Hugs! Willow

Cherry-sw

Hi Willow,

I talked to another doctor and she said that they ususally observe for neuropathy and lower the dose when a patient complains about the symptoms. She also can add som B6 through the iv, I will ask about this tomorrow. And will try to get myself those mittens If not I am bringing the ice. Hugs, Cherr

Willow22

clearpath and Angela, you are inspiring me to set a walking goal and just do it.... I know it's good for decreasing fatigue and brain fog, but I'm having a hard time getting started.

Rebekah, I feel like I'm in hibernation mode too... today is day 3, and I slept over 14 hours last night, but my stomach is feeling more settled and I have more energy than waking up yesterday. I figure our bodies know when we need to rest and recharge.
Hugs ! Willow

Kimberbir

Hi Ladies, I am sad to say that I am joining the group but am so thankful that it is here. I have been reading for a few weeks now. I will be starting my chemo on Aug. 24. I am BRCA2, triple positive. My anxiety is very high right now, thinking that may be because I have been through this with my mother three times (the cancer, the chemo). I am trying to stay positive since I do believe there is power in a positive mind. Want you all to know that reading your experiences makes me feel less crazy and alone,:)

PauletteK

Welcome Kim, we are all here for one reason, get well!

I think all of us are talking the unknown taxol and I haven't get to there yet, I hope I can find out more before I get there.

I found drinking fabric drinks help me a lot on constipation, remember I was one complaint so much about it. This time I drink my fabric drink daily it seems to help. I'm on my day 3 infusion #3

Cherry-sw

Hi Kimberbir, welcome, I am sorry you have to join this community. I am new here too, starting my first infusion tomorrow. I am also triple positive, there is a great thread called Tripple positive group. You will find a lot of help and advice here, it has been a lifeline to me, I literally did not know anyone who had bc, nothing in the family, but here I am. And I am glad that I have someone to talk to, I was going crazy before I found this forum. Cherry

Cherry-sw

Hi guys, when is it better to take my Zofran? I have an infusion in the morning 10 AM. Now or right before it starts

Clearpath

Hi Rebekah - yes, my plan for the hair is a Jon Renau wig I bought, also a baseball cap with hair from Headcovers, and some other hats.  I am ready, but am not happy to lose my hair - I hope it will still be brown and not gray when it returns. My wig fitting wasn't fun either - I felt rushed into making a decision, but I am happy with the final purchase anyway.  My mom came with me.  I think you will feel better in a few days - I felt much better after day 7 except for one day (day 9) when the Neulasta kicked in and I had back pain (but it was tolerable).

Hi Kimberbir - welcome - after I got my cancer diagnosis, I was tested and was unhappily surprised to find out I was BRCA1 positive (although I am not triple positive) - I know what you are going through.  A number of my relatives are now getting tested, and I will need to have some additional preventive surgeries (removal of ovaries and other healthy breast) once chemo is done.

Off for my evening walk now - good luck everyone!

Willow22

Hi Cherry, were you told to take zofran before the infusion? I was given zofran and compazine prescriptions to fill, but was told those were for after chemo, since they give me IV medications to prevent nausea as part of the pre-infusion meds. I think you said you are getting Emend as one of your pre-meds.... if so, that is an IV medication to prevent nausea during chemo, so you may want to check with your dr or infusion center before taking any zofran.
Hope you are able to get some rest tonight - it's hard with all the worry and nervousness about port placement and the first chemo session, but actually doing it was easier than what I had anticipated,
Hugs,
Willow

PauletteK

Hi cherry

I was told to have Ativan for the night before infusion so it will calm me down. They gave me zofran and emend during IV infusion would be better you check with your doc. Also welcome to our group.

SusanGA

welcome to the group Cherry. I think when to take what for what can be very daunting. Since the beginning of my diagnosis I have felt rushed by every medical encounter I have had. Thank God for these women who have fleshed out some of my instructions. They are very helpful.

Rebekah I am glad for you that you have gotten started. I think a long sleep now and then can be very therapeutic. Enjoy it.

Kimberber welcome to the club. Sorry that you have to be here but glad you found us.

Clear path I so ageee about the walking. I hope I can keep it up during chemo.

Willow I love the idea about a walking goal. On my bad days after surgery I divided it into three times a day. It was so much more manageable and I understand your get the same benefit, Here's to success.

Have a good evening ladies

Cherry-sw

I could not sleep much and all this feels so awful. I will only be given cortisone 30 min before the infusion if I understood them correctly, but I will talk to them before the infusion. I was not given anything else except for Zofran and Primperan for nausea

PauletteK

Cherry - ask you doc to get Ativan or something to help you sleep. If you want you could try Advil PM

Cherry-sw

Thank you PauletteK, I am heading to the ckinic now, I will ask them about some sleeping pills. I have an antianxiety pill, Lergigan, I am not sure the name will tell you anything, but when I take it I sleep too much, will try it today evening, Cherr

Kimberbir

Good luck today cherry-sw praying you have a easy time with your first chemo, if you feel up to it let us know how you are doing.

PauletteK

Cherry - I take Ativan it works great!

Ladies I found I became such a pickie eater now I can't take any food is dry, such as steak or even pork chop now. I need sauce or kinda wet do you have that problem??

LCin312

Hello, Ladies.

I am late to the game in 'meeting' you all and sharing my story, although I am right there with you and have been following along. I'll keep it short, but a little background. I was diagnosed back in April. I've always been more on the natural and holistic side of things, therefore gave that a try for the summer (with my MO's blessing but disagreement (I was shocked)). After 4 months nothing seemed to change, therefore am now on the full conventional route. I am either Stage II or III, three if lymph nodes are involved, but a PET scan one month ago was still quiet enough that they are unsure, however treating me as if it is locally advanced. I think the 'still curable' bait got me finally I pray to God they're right and I'm just stubborn.

I started round #1 of 12 of Taxol last week. Will follow with four bi-weekly AC treatments. I would say that overall, things were easier than I anticipated. My main issues are sleeping (from the steroids? stress?) and night sweats from the Lupron (I am 34 and trying to preserve my ovaries). I will be discussing both issues at my next infusion this Thursday. The hardest part for me so far has been my port. I lost about 12 lbs, that I didn't need to lose, and my skin feels so tight over the port. It's only day four however, so this will get better. I'm not sure if this will help any of you that haven't started yet, but everything so far has been easier than I worked up in my mind. The two worries that I am left with now are cumulative side effects (will this only get worse as more chemo is put into me?) and AC, as I've decided from reading sounds worse than Taxol?

I am letting my hair fall out and ordered a wig that looks exactly like my cut and color for work. I am going to try to work three days in the office and then two from home if I am able. For some reason I am most concerned about my eyebrows! It's funny what each of us holds onto as the worst parts of this.

I want to reach out to everyone of you and give you a hug. Especially, Kimberbir. When I read your entry I felt your pain and fear. It was exactly what I was feeling those first couple months. I think my mind has been my biggest hindrance and I work on that daily. Two book recommendations for you all: Talk Cancer to Me by Jessica Lynne DeCristofaro. You can only buy it off Amazon; it's fantastic. She survived Stage 4 lymphoma, but her attitude and tips on chemo, attitude, diet, etc. are the best I've found. Plus, proceeds of her book go to her dr to help others. The other is Be Here Now by Rob Bell. There is a bigger reason why we're all going through this, we just need to determine why (I bet you're all glad you're getting me on a positive day ) Lastly, and this may be due to my age, but following people like, Nalie Agustin have helped me not feel so alone.

PauletteK

Lcin - all of us are scared when we found out that we have cancer, this is something I didn't expert at all. But when it comes we can't stop we only can accept. I do think our attitude toward our treatment is important, my sister in law has stage IV breast cancer she is still with us after 8 years. So we can't do it. Eat as much as you can on your good days so you can gain some weight back, also I take Ativan so I can sleep at night. We do need the rest to fight this battle.

teaspoons

Hi everyone - dropped my baby off for her freshman year at college this weekend It was hard holding it together all weekend. She was already feeling emotional about leaving me, so I tried to hold in the tears. As soon as I was alone, I cried my eyes out. I'm feeling better today.

I was going to try to get through this experience without a wig and using scarves. It is so hot here in South Florida and I work at home everyday, so I didn't think I would need a wig. Plus my insurance doesn't cover a wig. But this weekend made me question that decision. It was the first time I had really gone out after shaving my head last week, and it was very difficult and uncomfortable. I got a ton of "pity" looks from people. I thought maybe I was just being paranoid, but a family friend with us said she noticed the looks too. I know I'm fighting a bigger battle than what people think about me or my looks, but it was hard ignore. Just thought I would write about my experience in case anyone was on the fence about paying for a wig.

Cherry-sw

Hi, I have just posted the same text on Weekly Taxol Group.

I had my first Taxol today and it was unremarkable but I was trembling as a trapped animal in the beginning. I was given cortisone, some antihistamine and even anti-nauseous meds via iv and were surprised that my oncological nurse told me it will only be cortisone. Herceptin 5 ml, was given as an injection in my tie, very slowly and I was very scared but the nurse said: I have already given you a half of it. I did not feel much, maybe because it was a first time I do not know. Then the nurse went on describing how Taxol will be given, about a possible reaction, what is the protocol and how she will stay with us during the first 30 min. She was very kind and tactile, like rubbed my shoulder telling me how tense I was. And I said I know but I cannot control it, I try to relax and breathe and then later I feel like my body gets tense again on its own. She said, if you will feel bad and cannot breathe we will stop and I will push the button, many people will come to the room at no time, do not be afraid you are going to be fine, it does not happen often. I have to admit I was so nervous, it was good I laid down otherwise they could wipe me with the sponge. I got the ice-socks and mittens. She started and I did not feel anything, the nurse checked my blood pressure three times, it went up a little but then went down though still was higher when it was before. I got a bag of over 500 ml, and what is strange I cannot remember the exact amount stated on it. I usually remember an image, a picture, some sort of eidetic memory, I still see the picture and I sort of cannot read it, only know that the first number was 5, because I remember me thinking it was half of liter and the last two were either 24 or 42 but I am not sure. Never happened before with a memory this fresh, chemo brain already? Another thing was when I was going to the toilet (the room btw was dull, no tv, we were two patients there, I thought this clinic could have better rooms), above the toilet seat there was a sign " If doing chemo please flash twice". I asked the nurse if I even have to do it at home and she said, yes, the drug leaves the body via urine so it has the highest concentration of it and no one at home should be exposed to it this way not even through the fumes, it is very toxic. And I was just thinking, yes, here I am getting over half of liter into my system, over 8 liters in total. What a disease that we have to be treated this way. I wonder if my husband starts avoiding me.

Cherry-sw

PauletteK, I looked it up, Ativan is substance lorazepam, here it is sold as Temesta. What I have is oxazepam, 5 mg, they told me it is fine to use if I cannot sleep.

Cherry-sw

Hi LCin312,

Welcome to this community, I am sorry you had to join it though. I know how hard it is to accept the situation, I am new here and I am still getting like less quiet nervous breakdowns like several times a day if my mind feels that there is a little energy left for those, otherwise I am just sad and trying to cope the best way I can. I did not know anyone with bc where I live and was chocked at the diagnosis because I had no family history and am still relatively young, children at home. I live in Europe, a smaller country, we do not have any communities that are that active and diversed, not of the same scale. There is so much support here and comfort, great tips, moderators are alert and posting links, not to mention it is a place to vent, something I discovered about myself after I was diagnosed is that I can be this whiny, but I am and probably even was before but not to the same extension. Well, it is all stress, and people who has been here for a long time (I am so grateful that they are still coming here to support the newbies) keep telling that it gets better. There is a great thread where stage 3 survivors have been posting for years, there are people who were diagnosed way back. I am triple positive, there is a thread called Triple Positive Group that started back in 2011, I am reading it from the beginning, interesting, have like 1000 pages ahead of me, but I am not working, am on sick leave, and have a lot of free time. I would have gone crazy without this community, but on the other hand I would have found it sooner or later, I was searching the web on bc all the time.

Cherry

PauletteK

cherry - you aren't alone we all in the same boat and we will give each other supports and listen to each other.

When are you starting your chemo?

Elfmcg

Hi everyone

I started dose dense AC yesterday, was really scared. Nothing note worthy side effects wise as of yet, thank God, but I'm holding tight for the coming days. I've just taken my anti sickness this morn and am getting neulastin today! I just keep thinking, one down!!! I hope we all have safe journeys through this, without many bumps. I'm 36 and everyone in there was a lot older but it was a chatty, and happy kind of few hours with everyone just getting on with it. It wasn't half as sad as I thought it would be.

Im shaving my head today and just getting it over with. Bye bye hair, hello scarf fest!

Good luck to everyone

Cherry-sw

PauletteK, I had my first Taxol yesterda