Starting chemotherapy March 2017

MommyErin

Hi Bethany- Looks like we'll be treatment buddies tomorrow. I was supposed to have my first TCHP treatment today (I'm HER2+, but ER-), but since my Dr. appointment went a little long beforehand, I start bright and early at 8AM tomorrow. I don't get my port placed until Friday so I'm not looking forward to the IV, but I think I'm mentally prepared (or hope I am). It's going to be a loooong day! Hope it goes well for you! I'll be thinking about you.

Lordhelpmetoo

Hi Bethany,

I've struggled with anxiety/panic myself. I'm on my second week of 20 mg of Prozac and Ativan for sleep. So, if you're in need for relief, don't hesitate to let your dr know

kimburke

Lordhelpmetoo, I also got a UtI after my first treatment. I went to the doctor and got antibiotics. Just had the burn when I pee symptom, not the fever though. What I found that helped to ease that discomfort is drinking 8 oz of water with a teaspoon of baking soda. Sounds yuck , yes I know. But it helped a lot. I have that for a few days.

Bethany , take your phone with you , play games, surf , listen to music, go on utube. Try and distract yourself while doing chemo. Talk to people on whatsapp . I also brought gatorade, water, snacks, my samsung tablet loaded with movies and books (didn't use it). Consult with your doctor re the anxiety and try and get something to relax you. Chemo is doable, it isn't as bad as we may think it is, Its the fear of the unknown combined with the what ifs. Just keep thinking , I got this, this will pass. Personally, I count down, having TC x4 , 3 weeks apart. I have done one , so three to go. My second chemo is on Friday, 23rd March. 9 weeks to go.

Tara 17 - 3 down now, great. Any other side effects or are you doing well?

Today is day 19 after my first chemo , The hair on my head is almost gone. I can see my scalp very clearly now. The hair is very thin now , but not all gone as yet. the shedding of the hair isn't as much as it has been the past few days, but I know it will all go at some point. I have noticed the hair thinning in my private area. But the hair all over my body, eyebrows, lashes, underarms, arms and legs all seem to be there in the same thickness. Prior I was dreading the hair going, now its happening i cant wait to stop shedding and get it done and over with. I have accepted that I will be bald for a while. I went out in a chemo beanie, No wig on Wednesday and I was ok with it. Surprisingly. i may not wear the wigs after all. Let's see.

Good luck to all the ladies stared/starting this week and hope we all continue to have less side effects and are able to go through chemo fairly comfortably.

Tara17

HI Kimburke--glad to hear that you are doing well with accepting the hair loss --grace under pressure! I completely agree wth your statement that Chemo is doable --it's the fears of the unknowns and what ifs

I got weekly taxol number 3 with herceptin this Monday. Nurse dug around to get an IV for a while and that was incredibly painful ---it still hurts. I plan to speak up about makign sure they get the IV in one stick next week. This is supposed to be chemo lite and so I naively imagined no side effects. I stil have blurring of vision for distance vision--I can read and the blurring is stable over one week, no worse, so as long as it's stable and ii can hope for it to be better after chemo, I will look forward to that. I have developed itching that is driving me crazy --didn't let me sleep and I took some beandryl to just fall asleep finally last night . The taxol also causes terrible joint pains --had so much hip pain yesterday that I found it tough to walk. But the muscle,bone and joint pain usually lasts from wed to Friday and then gets better--so as long as there is an end in sight . But all In all as you say doable.

My hair is starting to shed quite a bit -- wearing a beanie , not sure I want to wear a hot sticky wig. It's still winter so head covered with a beanie or hat looks totally fine . Haven't seen hair thinning anywhere else yet

Good luck to all ladies on chemo this week and all the best next week,

Soxfan75

Hi Bethany3 and MommyErin - It sounds like we're on the same regimen and schedule. I'm also on TCHP and had my first of 6 infusions yesterday. I'm ER+/PR+ and HER2+. My infusions are every three weeks as well, but I'll be following it up with 6 weeks of radiation because they found a microscopic amount of cancer in 2 of the 4 lymph nodes they removed.

How did yours go yesterday? Mine went surprising well. No allergic reactions and other than a bit of mild nausea, I feel really good today. I won't be getting the Neulasta shot because my white blood cell count was high yesterday. They think it's because I had a fill in my tissue expanders the day prior and the increase is due to inflammation from that.

It was a long day for me yesterday because my appointment was at 8am, but we didn't get the first drug, Perjeta, started until 10:30am or so. I didn't leave the hospital until around 5:30pm. I chose to do cold cap therapy as well so that extended my day until around 9:15pm. Hopefully after session 3 they won't take as long.

It's amazing how much anxiety is reduced by getting the first one under your belt. The next three weeks are still going to be a bit nerve-wracking because I'll be worried about whether the cold capping will work, but I have a beautiful wig on hand if I need it.

I never thought I'd say this, but I can't wait to call myself a breast cancer survivor! Stay positive everyone!

Lordhelpmetoo

kimburke

I hope your infusion went well yesterday and that you're not having any SE

ColoradoKiKi

Hi everyone decided I'd stop in and see how everyone is doing, hopefully well! I was 25 last year when I found this, currently I'm 26 and finally after a year of nothing due to medical negligence I'm finally getting things rolling. Had my first treatment yesterday, I'm getting dose dense AC followed by dose dense taxol so I got a long way to go but with a positive attitude and God besides me I know I can make it through. The whole treatment went surprisingly well, I was lucky to have a wonderful RN who was very compassionate and eager to answer any concerns I had, so I'm tremendously grateful for that, especially with it being my first round. I left feeling just as good as before the treatment but that was very short lived, within hours I was extremely nauseous and even the prescribed anti nausea meds weren't helpful, so I called the on call number and it happened to be my usual oncologist but he wasn't any help so I've been taking the nausea meds religiously every 6 hours but still not much help, hope this will let up soon as I wish I eat something more than crackers or dry cheerios, but the real kicker is for over a year I've been strickly sticking to water but can't even tolerate that at the moment but I shouldn't complain since I guess it could be worse. I just never taken any medication prior to this not even over the counter stuff so I think this is a placing a huge toll on my body going from nothing to 10 different medications all in one day especially through a port, thanks for giving me a place to vent it's nice to know you can all relate, I haven't been able to find a good support group where I live as of yet so this is really helpful. Praying for you all and hoping we'll all come out of this stronger and better than before or at least show cancer who's the boss, have a great Friday ladies, I look forward to hearing from you.

Tara17

dear Colorado Kiki--so impressed by your strength and perseverance that shines through in what you have written above. Sorry that you are having a tough time with symptoms . I think it's perhaps worst with the first one when one is learning how one reacts to all the new meds and chemo. I am sure you will find the ladies on this group very helpful. I especially love reading the stories from long term survivors --gives strength to those of us in the trenches of chemotherapy. Perhaps you can ask your oncologist about zofran pills that you can place under the tongue that dissolve to help the nausea ? Ginger tea might also help . Glad you had a good RN. I find its more useful to speak to the RN , especially the chemo nurses because they spend so much tiem with us , rather than the doctor about symptom management --perhaps you can speak to your chemo nurse in detail about this nausea next week. Sure hope you have a great weekend

kimburke

hi Lordhelpmeto,

I mixed up my dates. My session was today the 24th . Sorry about that. Started at 2pm and the iv needle was removed at 4:30pm. It was slightly different in reactions but still manageable. When receiving the docetaxel, I felt a burn which I didn't get the first time around. It was too bad, I rubbed the hand while it was incoming. The pre meds given through iv made me drowsy , so I came home and slept for about two hours. Had dinner and am relaxing and watching some tv.

No other side effects, at this point. Just feeling tired still and resting. Changing my toothbrush , as advised, with each new session. I don't expect to get too much sleep , due to the steroids, am on tablets for three days and it was also included in my pre meds through iv today.

Chemo is still being kind to me .

kimburke

P. S.

I start my three daily injections tomorrow, neulasta. Oh joy !!!! So I will be talking tylenol and Claritin, starting tomorrow to prevent/reduce the bone pain expected.

Will let you know how that goes and my days following the second chemo session.

My 3Rd session falls on Good Friday, so my oncologist has shifted it down to the Wednesday after , the 19th, as we celebrate Easter Monday here in Jamaica as a public holiday too.

Two down and two to go. Counting down again!

Butterfly1234

I've been reading various posts and decided to join. After hearing that I would "just" need radiation and hormone therapy I received my Mammaprint results yesterday. I am in the high risk group even though my clinical stats are low risk. More than likely I will need chemo. I'm terrified! I'm worried about the long and short term side effects. I don't have great hair but I don't want to lose it. I feel foolish because I know there are BC "sisters" who have more serious situations. Help! When I read about your side effects I want to pull the covers over my head. I'm in relatively good health in spite of the cancer but I'm 65. Not old but not young either. Any advice is most welcome. I did order Nancy Stordahl's Getting Past the Fear which I saw on another thread. I'm a retired teacher so knowledge is power. Blessings to all!

Tara17

dear butterfly 1234 -am sure you will find lots of support on thi site.dont be cared by reading about the side effect --as you can see everyone is powering through it and it helps to discuss the physical side of things on this board --only the ladies on this board can understand the physical side of what we go through on thi path.

In terms of you hair --many ladies have posted about cold cap to protect their hair and have had great results --search for cold cap posts on this forum . The best advise I can give is to only focus on what you have to do that day and the next and give it your best. One day at a time is what is workign for me. This is a marathon not a sprint, so one thing at a time.

Tara17

treatment # 4 for me on Monday . Hope they get the IV in one go this Monday --send me luck ladies! The taxol pain have been worse this week -- I am concerned that if I go on like this for two more months, I will be deconditioned . Am going to see the doctor on Monday and will ask her for more symptom relief.

Butterfly1234

Thank you for your kind words of support. I think fear of the unknown is the worse part of this whole journey. Blessings to all.

kimburke

Tara17 - Lots and lots and lots of luck on your treatment #4 and IV insert. Sending you positive vibrations and energy. Sounds like you really need something for the pain.

Did you read through this post? https://community.breastcancer.org/forum/6/topics/.... take a look to get some insight as to relief.

ColoradoKiKi

Hi Tara17, thank you so much for your kind reply with such encouraging words! I think you're absolutely right about needing time to adjust with the first round. I'm definitely going to call my oncologist again today to see if I can switch anti nausea meds so hopefully I can get some much needed water, I'm currently on the generic for zofran but it's a pill you have to swallow, maybe the one you spoke of would help more! I'll be sure to ask. I'm very inspired by all of you ladies in the group, I've read through every post and been keeping you all in my heart and prayers. The ginger tea sounds like it's worth a shot I'll have to pick some up. The chemo nurses are very helpful, I'm very fortunate to have got such a great one my first time and hopefully he'll be there the next time so I can bring this up and maybe we can go a little slower getting the meds in or whatever they think will help as long as it helps I'll be grateful. Hope you have a lovely weekend, and oh yeah way to go on already getting to #4 Monday I'll be keeping you in my thoughts that day in hopes of everything going well for you and I surely hope you can get some relief from the taxol pain, best of wishes on it all, stay strong and don't forget how far you've already come, you are amazing!

Tara17

Kimburke --glad you are able to say Chemo is being kind to you . The chemo nurse told me med burn more through hand veins and to ask for saline to go with the pre meds --that helped with the burning the next time, so that might be a suggestion for you to bring up . They told me they start low and climb up the arm --so they start with the lowest hand vein, then the wrist etc --so level of burn is different depending on the level of the vein. Hope your neulasta pain is well managed and that you get some good sleep. Thanks so much for wishing me well for #4 and for -posting the taxol pain link --very useful thread to read through and I will be sure to take some suggestions from there to ask my oncologist ! Wishing you the best for session # 3. Let us know how the bone pain goes.

All of us gals need our sleep and rest !

Colorado Kiki --good luck in speaking with your oncologist today. One tip about zofran --it can cause constipation so be sure to have some stool softeners on hand. Hopefully the dissolving sublingual zofran pill work better for you than the pills. There is so much good nausea Medicine that there is absolutely NO need to suffer from nausea or vomiting. So don't hesitate to speak up for the relief you deserve . You definitely need to hydrate --I like slowly sipping water through a straw if I can't swallow or gulp large amounts of water . Thanks so much for your your good thoughts and wishes and encouragement to me for Monday ! And in terms of callin me amazing --right back at you girl! Keep us posted on your ymptom management

Tara17

PS --Colorado Kiki - you can make a ginger "tea" at home for nausea as per belowand avoid the caffeine in store bought ginger tea

• One of the oldest and perhaps the best remedy for nausea is ginger. Try a warm cup of ginger tea. Peel away the root bark, then chop or grate the whitish part of the roots until you have one full teaspoon. Put the gratings in a mug, add a cup of boiling water, cover with a saucer and let it steep for 10 minutes. You can drink the tea when it's still warm or after it has cooled down a bit. If you don't have any fresh gingerroot, try eating a few gingersnaps or a piece of crystallized ginger.

ksambuchi

Soxphan45,

Always good to have a wig/hair coverings ready. I started my AC treatments (x4) in January. I am in the middle of my Tamoxifen chemo...2 more to go. I have diligently used the Penguin Cold Caps. I have lost about 80 % of hair and have decided to stop for the last two treatments. I have a couple wigs and wear baseball caps most of the time. It is worth a try and the AC treament was probably the worse for hair loss. It really takes a lot of effort on the part of your caretaking cold cap "team". Had to wear up to 8 hours the day of treatments. I am sure the Nails are much more manageable!

WGraf

I was planning on being in the Feb 2017 chemo group but I had an incision from my DIEP reconstruction open up and it took forever to heal only to get an infection in that same incision that was resistant to antibiotics. Spent 4 days in the hospital for sepsis. Now I am cleared to start chemo, tomorrow, and I'm an utter ball of nerves. They told me my infusion will be 7.5 hours long. I can't imagine how my husband will pass the time I'm sure he will make me more nervous because he will be so antsy sitting there. I don't see anyone doing my type of regimen but wondering how soon I might lose my hair.its very long, super thick and curly. I'm going out for a family dinner tonight. since I read this may be the last meal I enjoyed for a while. I'll post tomorrow how it went.

Best of luck to everyone with chemo this week.

Tara17

HI Wgraf --all the best tomorrow ! I think hair loss is diffrerent with every regimen --I have the same hair as you --- after two weeks, started shedding hair and hair is now half the volume ; because I had so much to begin with , no one call tell the difference but me. So I think in about ten days you will see a difference, but it initially may be only something you notice. Sorry that you had sepsis-glad you have fully recovered now

the first treatment is the worst because of the fear of the unknown but after the first week you learn how your body is accepting everything --all the best. Am sure you will do great!

kjlady

What is the point of the socks and mitts used for ? Is there any way to keep hair from falling ???

Tara17

kjlady --the cold sock and mitts are to protect the nails. Cold caps from penguin can be tried to prevent hair loss. There are entire fora on this site dedicated to cold cap if you wish to read more posts about it

WGraf

Tata17. Thanks so much for the info and support. I am praying it all goes well. I'll post when I get home. Getting ready to find out if I'm healthy enough to have poison put into me.

Butterfly1234

You are in my thoughts and prayers that yourtreatment today goes well.

Tara17

all the best for this week's chemo ladies! Let's all keep each other posted on how we do. I am off for weeklytreatment # 4/12. It's a rainy foggy day outside

Soxfan75

Tara17 - Good luck on treatment #4. Sending prayers and positive thoughts your way!

tinker-bell

hi Tara17 just saw your post with lovely encouraging words for me - many thanks! It feels tough dealing with the bone/muscle pain and other SEs when we expected/hoped it would be easier. I had a better week this week (2).I hope #4 goes better for you - good luck and hugs.

Tara17

thank you soxfan! Treatment #4 finished. When is your next treatment ?

Tinker bell --yes the bone and muscle pains hav been really tough. I have been very inactive due to that and I find it discouraging . Taxol was supposed to be easy chemotherapy but it's not been easy so far.

I saw my doctor today --a few thing she said which I thought would be useful to share to the group

1) taxol bone pain and muscle pain --she said this is an inflammatory condition and one need anti inflammatory medications. She asked me to start aleve. Celebrex can be an option for those who can't tolerate aleve from a stomach standpoint

2) itching --I developed this crazy itching! It's very pronounced on my hands. Benadryl, Claritin, Allegra did not work. She said this is neuropathy and started me on neurotoxin . So if you develop itching hands on Texanes, it's important to know this is neuropathy and should be treated as such

3) I dread IV starts. This is the most stressful part. At same time, I want to avoid a port . My friend who came with me today suggested I look into the freezing spray --so I located one ethyl chloride spray from gebauer --if the chemotherapy nurse approve it, then I want to buy it and use it as a spray before IV starts , blood draws etc . It's not clear to me from the website how to purchase , so I have to figure this out .

Anyway, I just wanted to share these tips in case it helps anyone.

I am the one who started this forum . At end of March, I thought I can summarize all the ladies in this group and edit the original post -many of us are getting taxanes, some are getting carboplatin and some are getting AC and then other targeted agents for many months. If we can all support each other to the end of all our chemo journeys and afterwards the journey after treatment if people still come back to post , I thought it would be really nice. Receiving support here feels great to me --when I get good wishes from the ladies here, I know you all truly understand what I am going through and it's very meaningful --we all have lives, and suddenly life came to a screeching halt with this diagnosis and I am trudging through illness -- but as my doctor said, this is the most common disease women get, and there are lots of amazing drugs. So there is LIFE and there is HOPE. I somehow can't buy into the pink ribbon, save the Tata, super positive thinking right off the bat , it happens for a reason --of course if this works for others, I totally respect that! For me, this is a trudge through illness, coming to terms with the fact that this disease and its treatments attack femininity --the breast, the ovaries the hair and the nails and we have to be ok with that to save our lives. I hope to be the person I was , not let it define me

somehow as a society , we don't take time to honor the negative emotions , mourn our losses, --the loss even of the comfort of the rhythm of previous normal daily routines we had that now have had to change with adapting to chemo , and we use limited words like depression and anxiety to describe the existential angst that follows such a diagnosis . This whole website with its many fora on different topics has helped me sooo much in this regard. I am so grateful that such an online support group exists.

of support and good vibees for all good things to all of you , my online friends

Tara.

Castigame

Exaclty a week ago, me an my hubby was waiting at infusion ctr  to get my first dose of AC literally about the same time as now. 930 am EST.

Anxiety kicked in even though, Lorezapam helped quite a bit.  Despite the fact. that all the staff were kind slow and deliberate, the sight of the two gigantic syringes filled w bright red liquid made me ask the nurse :What are those? are you really gonna put those in my system?

The first 24 hrs was quite OK.  Even walked 30 min to post office to  return a bad wig I did not like at all.  Next thing I remember was  nausea meds.  and the infamours Neulasta.  My mild mannered beagle freaked  out at the sight of green glow   As soon as it started going into my system, I felt my body temp rising. starting 36 hrs to about 84 hrs, bone pain kicked in.  my lord, please have mercy on me, could not stay awake 5 min during that  48 hrs.  and the swelling due to my body cursing me out " who gave you permission to give me all these foreign material?" Kept apologizing and defending at the same time" I am sorry, I had no choice"  Thank god for the icy hot menthol spray which permeated a brand new bed and bed sheet.     Finally bone pain was gone and the itching came about. I was slightly paranoid  that I would scratch my port while asleep.  Day #5 came that is when I saw a light.  a lot less nausea meds needed.   I thought it would be better from this time on.   One more hurdle, short and strong diarrehea which made me drop 5 pounds.   I sure was able to push foods down  all this time. so this came as a surprise.

All in all, I am thankful that the first chemo suckerpunch has been tolerable.  For starters, everyone of the side effects came one at a time. Pushing food down was not an issue.  Nausea medwise I may even try to reduce a little bit.  I found Lorezapam works wonders.  neulastawise I found out Tylenol and Clarityn would do me good. my DH even made a nice  meds time table for me.  and GI issue cannot be avoided after all the stuff.   at the end of the day  this is my war and I choose to stay alive.

time to go for a walk around the block and a nap