Topic: Starting chemo November 2020

Nov 24, 2020 01:00PM Etincelle827 wrote:

Hey marie914, thanks for the push. So today is my day 19 since my first TC treatment with Penguin cold caps. A few days ago my pubic hair and leg hair started falling out. Yesterday I noticed my arm hair was a little loose—I can pull some of it out with my fingers. About two days ago my head hair started shedding more than normal, but nothing alarming. I think when I wash it tonight there might be a little more. It is a little anxiety inducing as I have quite fine hair, medium density, and if half of it falls out it'll be very noticeable. Honestly though, I've had such an easy time with the chemo so far that even if I do lose my hair, it won't be that big of a deal.

Rainyday7: My heart was racing like crazy about day 4-8. I have a Fitbit, and my resting heart rate is usually in the high 50s, but it jumped to like 75-90 during those days. I don't think it was chemo drugs though, I think it was steroid withdrawal. My BP was also super low from the steroid withdrawal. Now on day 19 my resting heart rate is back to high 50s, but it took at least a week to get there.

I have my second treatment on Monday. Thanks everyone for sharing your experiences. Wishing you a happy holiday and hoping you find some joy in these crazy times. What an adventure life is.

Nov 25, 2020 06:48PM sharon0706 wrote:

Nov 27, 2020 12:52PM renbird wrote:

LMS458412-

Thank you for your veteran's perspective about icing hands and feet. I really appreciate it! : ) -Ren

Nov 27, 2020 04:29PM sharon0706 wrote:

Oh WOW renbird! I want to hire you to run my life! Very impressive. If you are this highly functional on chemo I can only imagine how much you rock things when you are healthy!

Nov 28, 2020 07:06AM renbird wrote:

Elledwriter-

Thanks for writing about your second round experience. It’s so great that we have each other through this tricky time.

Hair: I went wig shopping this week, but I have a HUGE head (I blame my Norwegian ancestry!) and nothing fit. Maybe a hairpiece will be part of my future too. : )

I know we can use health insurance and get scrips first our wigs, but $350-$500! Whooooa! Holy beehives, Batman!

I’ve also bought a $19 wig on Amazon. I may mess with it to make it work for me. We’ll see. Haven’t lost any hair yet, but I know it’s coming.

Keep the faith and Keep on truckin’ and Keep in touch.

-Renbird

Nov 28, 2020 08:55AM marie914 wrote:

Hello! I had my second infusion yesterday Friday 11/27 (it was the 24th day because they couldn't do it on the 3rd week Wednesday since it was a 1/2 day and with the cold cap I go until 2:30. I do TC and DigniCap and I lost some of my hair (it felt like most of it, but really wasn't) on the 19-21 day. I am still shedding my not as bad. I lost it mostly on my forehead and then some on my top of my head towards the back. I can cover that well with combing, but the forehead looks too bare to me but my husband says it is fine. I usually wear a ball cap if we go out.

rencap - I LOVED your organizational skills. I will print it out. I took notes but still some things I don't remember. I bought a few cheap wigs from Amazon to try and one I thought was fine but my husband and son say I just need a ball cap. They just aren't used to me in a wig I think, but others probably wouldn't know. I didn't want to pay all that money since I am really not going to work or anyplace I need to look "good". I work from home and we haven't had to use our cameras so that is good . It is kind of a planning season and if I do have client calls I just project my presentation and not me. :) Oh and my head is big and that is hard for those wigs. I heard you can get one meant for a man transgender or impersonator. LOL

Lesli - glad that lower dose of steroid helped you. I was looking at renbirds spreadsheet and she takes a lot too it seemed. I might be wrong since I was looking on my phone. I liked your idea of a headband and planning on buying one today. I'm sorry you and renbird both have reactions. My infusions seem to be going well.

One thing I was going to mention. Not sure how I feel about my oncologist. Her "new" nurse practitioner that was an infusion nurse came in first and was kind of combative when I asked about my dose of chemo drugs since mine seemed to be high and my second infusion of cytoxan was 1 hr 30 min. She argued and said that isn't right you need to tell the infusion nurses. I said they aren't going to listen to me they said it is the doctor's orders and she said here are the doctors orders that is not what they say. I got kind of testy and said well that is a problem between you two and not me I didn't like her at all. The doctor was better. HOwever she says I don't need blood work in between infusions since my blood work was good the first time. But can't it get worse?? Shouldn't she check? Then she said my next infusion has to be 21 days so unless I want to go 25 days to stay on Wednesdays I have to go on Fridays. She says she is not in that location on Fridays (I saw her on Tuesday in her closer location) she said that I could just see her nurse practitioner on Friday before my treatment on 12/18. I just thought that was funny but maybe it is okay. At least I don't have to go to a bunch of doctor and lab appointments the next 3 weeks.

I have to get my last fill in my expander 12/9 and then 12/11 I have to have a mammogram on my "good" breast since it has been a year. Weird.

Sharon0706 - I used the booties the whole time I exchanged them half way through with new ice packs. The mitts I don't use very well since I want to be on my phone. I use one and then switch hands. I might just use ice bottle water instead because then my fingers will work on my phone.

JoW888 - I was on the border with my Mammoprint but I decided 4 rounds of TC isn't too bad and so I went for it. Food was all over the place for me Day 2-10 something like that but then all of a sudden I could taste again but still some foods I didn't want to think about. I never was nauseous but my stomach was always rolling that first week. I think because I was trying to avoid constipation which I am prone to when I have anesthesia, steroid, or chemo.

Etincelle - my fitbit resting heartrate has been higher than normal too. Kind of bothersome but I guess it is okay. My pubic hair and my nose hair has fallen out. My legs are pretty bare without shaving. I haven't noticed arm hair yet. I am using serum for my eyelashes and brows which are thin anyhow (since menopause) so hopefully it will help. My hair is thin too so the hair loss from chemo even with dignicaps is scary, but then I think it isn't that bad even if I lost all my hair. I just don't want the permanent hair loss they talk about with taxotere.

Dannib - Hope your infusion went well yesterday. I don't feel bad until end of day 3 (day 1 is infusion day) because of bone pain from neulasta. My stomach and taste buds were iffy for about 10 days but for 2 weeks I felt pretty good.

puncapher - I have muscle relaxers for my implant expanders so I might use them this week if the muscle spasms come back.

Rainyday - The neulasta was the worse for me end of Day 3 and Days 4 and 5 then gradually got better. The taste buds didn't come back for 10 days. I felt smooth thin stuff felt and tasted better like pudding, shakes, soup, thin stews, crackers in my soup and stews, etc. My heart rate higher too on the steroids and when I am in pain. It is higher than my normal.

Have a great day! My day after chemo is always good. I get a lot done. Cleaned kitchen. Washed kitchen floor. Made soup for today and next week when my taste buds are gone. I found soup or thin stews with crackers are the only things I like. Well and ice cream shakes but I am trying not to do that too much. I washed and changed bed sheets. Washed towels. I am trying to do al ot when the steroids are in me.

Dec 2, 2020 08:08AM marie914 wrote:

Good Morning! I haven't heard much from anyone. I hope you are all doing well and just busy with the holidays.

Sharon0706 - Most of what you said sounds the same for me. I hate wishing time away but I wish it was late January or even late February. My last infusion is January 8 and my exchange surgery getting the expanders out of me will be middle of February.

I had my 2nd infusion of 4 TC on Friday, November 27. I am feeling better than last cycle. Bone pain was bad Monday evening and a little yesterday. Bad headache every morning but I think I am not drinking as much as I should. It is so hard to keep drinking.

I am doing well with eating soups/stews. I made homemade chicken noodle soup and it was "good". Over the weekend I made Pasta e Fagioli soup (Olive Garden). Tomorrow I might make beef stew. My taste buds seem to be getting better quicker this time. Last time I chipped a tooth chewing on ice. I do like sweet things but I am trying to avoid too much of them and eating protein and vegetables.

Hope some of you will check in and let us know how our other November chemo buddies are doing.

Dec 2, 2020 10:21AM Rainyday7 wrote:

Hi all. I'm on day 17 so finally feeling normal again. It's only now I've realised that I had a dull headache for the first 2 weeks as well as the light headed feeling. I baked a coffee cake earlier and could taste it so that's major progress.I

I used the paxman cold cap but I'm not holding out much hope of it working. The nurse had never used one before so I knew more than she did. It never felt too cold when on. I'm wearing a hairnet to catch the loose hairs and every time I touch my hair a handful comes away. I'm wondering if it does all go before the 2nd chemo should I continue to use the cold cap. I'm on taxotere so more worried about the long term risk of permanent alopecia than the short term hair loss. Will I get any benefit from freezing my bare scalp?

Dreading no2 but hopefully I should feel ok for Christmas as no3 not until 28th.

Dec 3, 2020 10:50AM Rainyday7 wrote:

Marie,

Good to hear the 2nd infusion is easier than the first. Hopefully I don't get the awful bone pain this time.

I'm in Ireland so it's a bit different in that the hospital has a few cold cap machines but not many people use them. There is no charge to use it. Cancer treatment is generally covered by the state but about 50% of the population have private health insurance anyway . The insurance is more to cover inpatient treatment and to get quicker access to specialists. My insurance will cover the cost of a wig so I have one ordered. I actually have one in the back of the wardrobe from 15 years ago but my hair was longer and darker then so it looks ridiculous now.

Dec 3, 2020 01:46PM Elledwriter wrote:

Hi everyone,

I had my second chemo treatment on Nov 25. I’ve used DigniCap and had lots of hair fall out after the first one. I was so bummed, however I’ve noticed that much less hair is coming out since then. My crown has thinned, but I’m thrilled to say that my hair has already started to grow back in that area! The nurse who helps put the cap on said to keep doing it because the hair grows faster and thicker than without using the cap. Just hope it continues!

I’ve done so much better this round than the first. My third round is on 12/16. Crossing fingers that this also will go fairly well.

Dec 4, 2020 09:45AM DanniB wrote:

Puncapher - Happy Birthday! Sounds like you had a few lovely treats from your loved ones

SweetTart - i got my partner to clip my hair 3 weeks ago, from just below the shoulder the blade to 3 cm short. I was offered the cold capping but chose not to. I like my new hair now and will shave all as soon as it starts falling out.

Marie914 - I was initially going to have CT infusion, but this was changed to Taxol alone due to my oncotype score been relatively low at 16. i did however ask the doctor about the possibility of a permanent hair loss. He said that the risk is low and practically NIL with cold capping (which i would have done i was still on the CT infusion).

Rainyday7 - big hello from London :) we have pretty much the same with NHS / private care here as you. My insurance will cover some of the wig and also prosthetics.

I just returned from my 1st round (this got moved twice from 20th Nov to 27th and finally happened today) of Taxol. I had some 4 drugs first, then waited half hour and then had 3 hours of the medicine. Its a bit hard to find my veins, as i had a lot of blood / canulas in over the last 2 weeks due to fertility preservation and A&E trip, so my available arm is black and blue. Amazingly, when the nurses saw it, they did it with the help of the ultrasound and it was brilliant and pain free (i honestly was dreading the poked veins more than the meds). The rest was luckily uneventful, just got a bit of bitter/ odd taste at the back of the throat. I got anti-nausea, strong pain killers for muscle pains and sleeping pills if i need and am resting at home now. I had some food and so far so good. I will checkin in a few days or when i start feeling the side effects to update youQuick question - has anyone who lost the nipples has any experience with stick on prosthetic ones? Would really welcome any pointers / experiences :) I ordered some from US company called Pink Perfect.

Best wishes and much love to all x

Dec 6, 2020 06:51AM renbird wrote:

Hi Sharon-

We are really in synch (I wish it were for something more fun, like loving chocolate, or sharing a birthday!)

I'm on Day 17 of Round one of TC. I lost a bit of hair yesterday, despite cold capping with Paxson system. I got a little upset yesterday, as part of the dread, the waiting, you describe.

That's what it's like—exactly as you described.

With the exception of reconstruction (I'm six weeks out from right single mastectomy and staying flat) I relate to EACH of the things you listed on a visceral/emotional level:

"...waiting for MRI results, waiting for biopsy results, waiting for surgery, waiting for pathology results, waiting for oncotype score (35!), waiting for chemo to start..."

That's one of the reasons I had the mastectomy after two attempts at lumpectomy. I couldn't imagine waiting for ANOTHER round of results after re-reexcision, or waiting for the results of thirty more years of mammograms (God willing I live to 78 or beyond!)

Anyway, I've also started to dabble in my potential hairless lifestyle:

-So far, I've had an appt with a wig specialist (they were all too small, but she may be able to order a special large one for my big Norwegian noggin'!)

-I ordered two $19 wigs from Amazon. They were pretty good, but still small. Think I'll try an online wig retailer instead. Got my script because those babies are $300-$500!

I too have been messing around with CBD with no success, but also taking a little less than 1.0 ml (50MG) via under the tongue syringe. (The bottle says a "serving size" is 1ml.)

Silly question, but would a Tylenol PM help? Even one has helped me sleep.

Next round for me: This Thursday, Dec 10. You?

-Renbird in RI

Dec 6, 2020 09:38AM - edited Dec 6, 2020 01:02PM by Rainyday7

Sharon and Renbird. I am on day 20 and used the Paxman cap. I feel I have lost half my hair based on the width of my pony tail. The only thing is it's evenly distributed so far. The itch at the back of my head is driving me mad and and I'm actually looking forward to the cold cap tomorrow to numb my head for a few hours.

The hair loss only really started on day 16 so hopefully it will calm down soon or it will all be gone by the end of the week. The hospital think I'm crazy to bother with the cold cap as it is so they will def think it if I continue to use it with a bald head!!

Dec 8, 2020 07:06PM Juju-mar wrote:

hi JoW888,

My first infusion was similar to yours. The GI stuff was uncomfortable. I too had no nausea, no vomiting. One day of fever. Some brain fog and fatigue. Today I completed my 4th round of AC and each 14 day cycle was very similar. In fact the 3rd round I felt almost normal! Only a few days of GI distress. And a little tired. I hope it goes as smoothly for you 😊 I begin Taxol in 2 weeks, so praying I respond well to that med. Best of luck to you.

Julie

Dec 10, 2020 09:33AM marie914 wrote:

That's great Rainyday! I am about 14 days out from 2nd TC and feeling pretty normal. My taste buds just came back yesterday - almost all the way. Before that nothing really tasted good. So I have 9-10 days until they go away again. :)

Jo - I was the same way. Not looking forward to it now that I am feeling better but just want it done.

My bone pain was better too this time. I had it in my knees and pelvis the first time and the second time a little in my knees.

My hair is still here. I lost a lot of it but I can wear it in a loose ponytail and people don't notice unless they know me pretty good. I usually wear a ball cap when I go out though. I have used serum on my eyebrows and lashes and they haven't fallen out yet but I heard they are one of the last ones to go. I have lost hair other places - good places though - upper lip and legs and underarms, etc.

Hope everyone else is doing good. We can get through this chemo. I have 2 more left. Also my expander exchange surgery for my left breast implant is scheduled for February 1st. I had surgery before they knew I needed chemo so I had my expanders almost filled and they kept it up.

Have a great day!