Chemo in July 2015

inkster

Welcome, 27heart! Nice to meet you.

I've been hanging around the radiation boards as that's my next step (like in the next week or so next step). Honestly, the comments over there are scaring me. I wonder, though, if it's a matter of perspective. While I'm sure it's not a cake walk, surely radiation can't be as hard as what we did/are doing. Right? Has anyone already been through it and have some advice or input?

Ooo! I *think* I saw stubble! Either that or some of the few remaining hairs on my noggin broke off really short. I like stubble better.

Hope everyone's day is easy and has at least one good bright spot!

Jbandkb1

Inkster my mom had breast cancer 4 years ago. She had radiation with no side effects or complaints & my mom isn't good with anything medical.She said it took longer to get changed then the radiation it self. She didn't need chemo & from what I've heard from others who have done both chemo is much worse. Try not to let others scare you.

inkster

Jbandkb1, that's hugely helpful. Thank you!

6feetover

I decided to be brave and do a thing...

Oh cancer up yours!!!

ETA:

Here's a slightly less scary version, with specs:

Thunder7

Adarkadaptedi, I whole heartedly agree with your statement! :-)

Thunder7

Bliss58

Welcome, 27heart! Sorry you must be here, but glad you've joined our group. Always lots of good information and support here.

Inkster, best wishes to you and good luck as you take the next step in the journey.

Suzanne1971, hope your 5th TCHP went well today. My 5th is tomorrow plus starting Zometa; at least I think I am. My RBC/hemocrit were slightly low and my platelets have been the lowest yet; 159. My treatments have all been pretty manageable, too, which I am very grateful for, but the last time I think I didn't hydrate enough and my lips dried and cracked something awful plus additional fatigue set in. I guess because of my lower blood counts.

Hugs and best wishes to all!

27heart

Thanks for the warm welcome girls, as I've mentioned in another thread, finding friends and support here is the next best thing to being NED now.

Just to share, I'm on a weekly taxol now, and have just signed up to be a volunteer teacher at a cerebral palsy school. Im starting next week, and im rather excited about it! I haven't been feeling too good emotionally, and im hoping that this new schedule will help me to find my sense of purpose.

I've been struggling with some esteem issues (just realised that I am self-loathing today), and am seeing some psych help. Anti-depressants have started to kick in a little too. Im feeling quite numb these days.

I've switched my taxol from every Tuesday to Fridays to fit my new schedule. Looking forward to better days. When I feel down, I try to remind myself that at least I'm past the AC days. Those days were hell..

Hope everyone has a great day today!

mdoc524

Hello all .. Happy October 1st - never thought Breast Cancer Awareness month would hit home so much - sooo many mixed emotions...

Been a little while for me since last post ... and Holy Cow my 4th and final AC on Sept 18th absolutely crushed me and this again was with the dose reduction. I was in bed for 8 days ... almost had to go to ER .. temp jumped to 100.4 on Saturday and on-call MO let me stay at home to monitor and said if it goes up 1 point I have to go and fortunately it just hovered for a few days from 99.7 to 100.4 and never higher - WHEW.. I have to say the last 8 days I have never in my life felt so horrible - it was like the never ending flu .. lost 15 lbs in those 8 days UGH... (( gargengirl - thanks for the note on Desitin - it did help ..)) .Finally yesterday and now today feeling on the road to recovery .. now mainly dealing with horrible Sinus Headaches/pressure which I am not sure if chemo hit my sinuses or Allergy related or both but the headaches are horrible ... and the TV is evil when you are sick - I was eating crackers and the Rachel Ray show was on with someone making Brownies putting whole chocolate bars in the mix and then baking over homemade Graham cracker crust ... I was like Seriously - when would I ever be able to eat something like that again LOL ... although the POPE coverage on TV got me thru it .. it was beautiful ..

SVGsurvive and 27Heart - so sorry you have to be here but glad you found us - really great group of very strong women here - we are here for you whatever you need... keep us posted on how you are doing!!

mama26 - so so sorry you were admitted again - so hoping we both would avoid the hospital on this last AC .. please tell me you are home and OK now!!!!

Ruth - sorry you are still experiencing effects - hope the ProBiotic works - I take Ultra Flora everyday .. hope your DR appointment Monday went well and I am not waiting on Reconstruction. I had my BMX with Tissue Expanders done in May and I have gone every few weeks to have the expanders filled and will have the exchange to implants probably in Spring when done Chemo and Rads ... I wanted it all over with ... I don't think it would hurt for you to meet with Plastic surgeon and get all info to help you decide ...

Suzanne1971 - so glad you have been feeling so good - that is awesome - hope it stays like that for you (Jealous HA) .. I agree Chemo is the worst of the three and if you want any details on BMX - pm me happy to share ... good luck

madrew - WOOHOO you finished chemo - Outstanding!! I understand the Jinx thing ... Good luck with Rads

Inkster - so funny about the stubble .. good luck with Rads - let us know how it goes - I will be heading there when done my 12 Taxols .. Totally Agree NOTHING can be as bad as Chemo

Erika - simply Awesome - love it!

All I will be starting my 1st of 12 Taxol's tomorrow .. just so hoping it holds true for me to be easier than AC .. as long as it is easier on the stomach I'll take it .. hugs to all! Have a great rest of week

Mary

Suzanne1971

inkster, I've heard that chemo is the worst of all the treatments, so I'm sticking with that story! I still have bmx before rads, so I'm months away from that step.

Round 5 is in the books- one more to go. And I'm over it! Today is usually a good day as I'm hopped up on steroids, but not this time. Feeling the toxicity creeping in, and hope this weekend isn't as bad as it usually is following an infusion. At least if I have to spend the weekend on the couch, I won't feel like I'm missing out, as the weather will be as blah as I will be.

With each day, I keep telling myself I only have to deal with this one more time. Will be so happy when chemo is over. Still waiting on the date for surgery, and thanks for the offer to chat Mary!

mama26

Mdoc524- I came home from the hospital this past Sunday. They loaded me up on antibiotics and fluids as usual. They still never found a source of infection. I go for round 1 of Taxol this Monday October 5th. I'm a nervous wreck because I've been so sick but I know I have to do it. I'm so sorry you got so sick but I'm relieved you avoided the hospital. Congrats on finishing your last AC!!! Prayers for both of us that Taxol is not so severe on our bodies. Take care!!

27heart

If it helps, taxol has been much easier on me than AC!

Bliss58

Suzanne1971, sorry you're SEs are creeping in for the weekend, that's usually when I get mine, but today I'm doing pretty well - surprisingly. I too have the 5th THCP down and one more to go; can't wait for that! Will you continue on with H after the chemo? I will go six more rounds of it alone. My echo came back with no change, my MRI showed significant decrease in the breast tumor and affected nodes are clear, so I've had a good week and I'm pleased to say this regimen seems to actually be working. I'll be back with the BS to discuss surgery and RO for what else may be next. Gloomy weather this weekend in my world, too. Fall is definitely here.

Hugs are around to everyone.

mdoc524

Hello All - quick ?? - had 1st Taxol yesterday - no immediate reaction WHEW...

Today -exhausted but that could be still recovering from how sick I had been from last AC... But my face today is redder than a stop sign I was thinking because of the IV steroids ... Steroids always make my face red - just did not expect that to continue more than 24 hours after the infusion. Anyone else experience Red hot face day after Taxol ??

Also weird - my thumb on my right hand is Red & Hot & sore to bend (no injury) - neuropathy starting?

Mama26 - so so glad you are home! 1st Taxol went well - the Pre-meds they infuse really knock you out - I was really nervous too that I was not recovered enough from AC so they gave me an Ativan about 30 minutes before the Taxol with the other meds & suggested I take that every week 30 minutes before arriving & I plan to do that! If you have Ativan I recommend it taking 1 before going or ask for it when you go... It did help. Good luck Monday - let me know how it goes 😘

Suzanne & BJSmiller - hoping your SE's aren't too bad this weekend & good luck for your last one

Mary

mama26

Mdoc524- Glad to hear your first taxol went well! I will definitely ask for Ativan. I am so nervous about Monday. I've been running a low grade temp off an on for 2 days now. I don't want my treatment to be delayed even more but I'm worried I'm not recovered enough to start taxol.I guess my blood work will tell the tale. I've heard if you're going to have a reaction to the taxol it won't be until your 3rd infusion. Don't know if that's true or not, just something a woman I met during chemo had happen to her on her 3rd infusion. Keep me posted on how each day goes and I will do the same starting Monday. Take care.

Peabrain

I had a mild reaction during my first Taxol/Carbo treatment, my mouth and tongue tingled a lot, like my tongue was trying to crawl away. They stopped the treatment, which stopped the reaction, had a doctor look at me, gave me extra steroids and continued the treatment. The doctor said he'd never seen that reaction before, my brothers said it figures that I'd make up a new reaction. They will give me extra steroids before the remaining treatments to keep it from happening again.

I had my 3rd Taxol/Carbo this week and am still having side effects, fatigue, tingling in hands and feet, fatigue, the usual stomach issues, light headedness and more fatigue. But my friends are in town for a low key birthday celebration and I'm having fun.

@Mary - what does the Ativan do for you?

Hugs to everyone.

gargengirl09

Mdoc-I also experience a super red face for the next day or two after Taxol. It's the steroids, I think. While it is much easier than the AC, I find that that I have more joint pain. The nurses told me it's the fromTaxol. It is especially painful at night for some reason. I feel much better now than I did with the AC. I am thankful for that!

On the bright side, my hair on my head is starting to grow back! My acupuncturist has been putting in needles for hair growth on my head. It's working!! Oddly enough, my eyelashes and eyebrows are starting to thin, thanks to the Taxol. I'm wondering if my new peach fuzz is going to fall out too!

I'm still not sure how I feel about the whole "Pinktober" thing. Maybe I need to be a little further out from treating breast cancer. My 8 year old daughter commented a few months ago that pink isn't her favorite color anymore. It makes her think of breast cancer. Seems like everywhere I look is a Pink ribbon this, and a pink ribbon that. I just have to wonder if all of the stores actually give money to breast cancer research.

Hope everyone is doing well and SE free!

MissBee123

Happy October! I've missed visiting here. I had to take a break from all things cancer related after receiving the news that I have a secondary cancer. I was pretty depressed but am feeling a bit better now.; at least it's only thyroid cancer. It feels funny to say "at least" but all things considered, it is very treatable.

I love seeing that everyone is making progress towards the finish line! My next chemo is going to be delayed by a week because my wbc count was too low. Until now I've rebounded back to normal levels without needing the neupogen shot, but my oncologist says I will have it going forward.

Can I ask a slightly personal question? Is anyone else experiencing extreme pain during sex? I know chemo causes thinning and dryness (on top of early menopause…dear God the hot flashes are HORRIBLE!) but it does not seem to be helped by using a lubricant. It's a burning pain—not allergic—and unless there is a way to resolve it I think sex is going to be off the table for awhile. It was so painful I had to stop. Has anyone else experienced this and, if so, did you find any solutions that helped?

gargengirl: so glad your hair is coming back! Hurrah for peach fuzz.

mdoc: the thumb soreness sounds like neuropathy. It started in my thumb and index finger, very similar.

bjsmiller: can I ask why you are only having 6 rounds of Herceptin after you finish chemo? I have TCHP as well but will be receiving Herceptin for a full year.

27heart: are you going to work at a UCP (United Cerebral Palsy)? I'm a special ed teacher/therapist, happy to share any tips and tricks if you need them! Have a great time volunteering!

27heart

Hey missbee! Great picture there. Sorry to hear about your secondary cancer. But thyroid cancer is one of the "best" cancers to get right? Have you gone for your surgery yet?

I didn't have much issues with intercourse. But I've been single since I started on Taxol, so I might not be of much help in this department.

I'm starting my first day as a volunteer tomorrow! Lots to learn. Perhaps I'll send you a PM if I need some tips. Thanks for offering! Are you still teaching now?

mdoc524

Mama26 - try not to worry too much about Taxol - it really was not bad at all and my nurses said the immediate reactions can happen but are not frequent and they know what to do ...ask for the Ativan it will help... you will do great.. I was running low grade temps all week and was in the 99 range when I got my Taxol - they were not concerned ..

Peabrain - Ativan calms you down and can help you sleep .. I take that instead of Zofran for Nausea when needed as well .. take it every night before bed as I can never fall asleep .. I was so hyped up before Taxol the nurse suggested the Ativan and gave me a dose and suggested I take it before coming each week .. Is it your Birthday you are celebrating - if so Happy Happy Birthday to you !!!

gargengirl - thanks - my red face is fading today .. I figured it was the steroids but was alarmed as it was way worse this time that with the steroids on AC .. L-Glutamine supplements might help with your Joint Pain .. I just started taking it

MissBee - first glad to hear from you and hugs to you to have to deal with 2nd cancer even if it is Thyroid and a "nicer" cancer if there is such a thing - it just stinks .. good luck with all treatments and hope your WBC's rebound with the shots .. thanks for sharing you experiences neuropathy starting in thumb and forefinger .. I never expected my Thumb to swell and turn red and be hot to touch .. I just today started taking L-Glutamine to see if that helps it ... Regarding your painful intercourse ?? - not sure - sad to say have not had sex since starting mainly because of how crappy I have felt and my husband has been great about it - was hoping that once I got to Taxol would feel better and give it a try ... I think there is some forums here about sex that there might be helpful info from others ..

If anyone here is taking Powder L-Glutamine for Neuropathy or Joint Pain can you share how much and how often each day you take it - there are so many conflicting articles on dosage .. for those not taking it - may want to consider - read lots of folks found relief during chemo taking it ...

Happy Sunday All

Mary

mdoc524

MissBee - there is a whole Forum called Sex Matters with lots of topics on Sex - you may find some helpful info there - I plan to check them out too ..

https://community.breastcancer.org/forum/150

Cheesequake

MissBee, I'm so sorry for your new diagnosis. What is/are the treatment/s for thyroid cancer?

As for pain during sex, I have a constant, slight burning sensation all the time now, that is definitely exacerbated by sex. I have taken to using coconut oil and a panty shield all day, which I find helps minimize the burning sensation quite a bit. I just liberally spread coconut oil in an around all affected areas immediately after a shower. A little goes a long way, I don't find I have to re-apply through the course of the day, though I do during sex - that and LOTS of spit (TMI? Sorry.)

Bliss58

Hi MissBee, I say the Herceptin is for 6 more rounds, and I'm sure that's what I was told, but I'll have to ask my MO for clarification because I also think she said I would be on it for a year. I just did the math and 6 more rounds does not get me to June!

Batesburg

@ Peabrain: I came up with a new term for how I feel after taking carbo/taxol....I call it the "carbo flu"......just a feeling of YUCK. What do you think?

Suzanne1971

BJ & Missbee- I will be on herceptin for a full year (4 months down so far). Good thing I like my chemo nurse, as we have many more infusions in our future

Missbee- so sorry to hear about thyroid cancer. Sounds like you are handling this well. Keep your head up, and we are here for you, as always!

I wish I could speak to the sex talk, but I've been single since before this all began, so, well, no comment. Eventually I will have to figure out how to navigate the waters of dating, and explaining my lack of (real) nipples

Mary- the taxotere I receive can give me that sunburned face/neck for a day. Hasn't happened the last few rounds, but def noticed it in the beginning.

So far round 5 has been about the same- weekend of blah, but perking up now. To know I only have 1 more round is really lifting my spirits, even when I feel so gross.

On a side note, a friend brought me Pho last night (Vietnamese soup), and no lie, it made me feel so much better. I highly recommend it if you have a good restaurant!

Mamiya

Batesburg, I concur with calling it the carbo flu. I go get my next dose of the carbo flu tomorrow. Ugh.

SVGsurvive

@mdoc524, thank you for the welcome!

Re: L Glutamine, I started taking it ~1 week before my 1st Taxol. It's a giant jug of powder. 2x a day I take 15 grams for a total of 30g/day (this was the recommended dose per Kaiser). Mixing it in OJ or lemonade fully masks any taste for me - just keep the spoon in the cup because the powder settles to the bottom quickly. Also pro tip: don't go to GNC and pay a ridiculous amount like I did. Buy it from Amazon.

I've been told to take it throughout Taxol & 1 month after last infusion. It's supposed to be preventative, but I got the vibe from my MO that she's not 100% sold. Whatever! My fingers & toes are numb often, especially when I'm laying down - and often my pointer/middle fingers are super sensitive to touch or using the nail. So I'll try anything.

Finally, I had my Taxol allergic reaction ("period like" stomach cramps, lower back pain, calf pain) on Round #2, and met a woman who had her allergic reaction on Round #4. Similar to mdoc524, the nurses took care of it in minutes. They gave me 50mg more Benedryl (wheeee!), some steroids and more saline. All was well.

Peabrain

so when we're done, we'll be Carbofluent!

MissBee123

Thank you all for your kind words and good wishes.

27heart: Surgery will be after I finish chemo. They were initially debating whether to halt chemo temporarily but in the end my oncologist decided to overrule my thyroid surgeon and said the surgery should wait. I'm glad he did; I feel like I've got enough going on! Please feel free to PM me about any advice with CP kids. I'm doing part time therapy now, but looking forward to returning to full time once treatment is complete.

Mary: Thank you for the link! I will be checking it out.

Cheesequake: Thyroid cancer is only treatable by surgery and removing the thyroid. I will then be given synthroid, which is a pill that replaces the function of the thyroid, and is needed daily. As for sex, I will try the coconut oil (and some spit, lol!).

OK! Off for an MRI and echocardiogram. 3 chemos down and 3 to go. Woo!

mdoc524

SVGsurvive - thanks so much for the info on L Glutamine... I did get the big jug from amazon - I have a few more ?s if you don't mind... When do you drink it? and How much Fluid do you put it in ?? I have only been doing 1 TSP 2x per day so obviously have to increase that and I only started it yesterday and drank it in a glass of water and then proceeded to PEE 5x over the next hour and a half .. do you notice that ?? Was thinking I put it in too much fluid and guzzled it down ??

I am really concerned about the neuropathy becoming permanent as I have mild neuropathy already from a neck injury that is really not bothersome.. this that hit yesterday is very bothersome - my Thumb and index finger are red and hot to touch and hurt when I bend them .. I guess in the grand scheme of things I could live with that but really stinks since it is my right hand - left hand is fine of course..

My MO not sold on L Glutamine and would not comment one way or other - just wanted me on B-Complex Vitamins ..

Let me know your thoughts on above - thanks so much

Mary

Batesburg

@ peabrain: I suspect many of us will believe we are "fluent" in many things considering what we are facing and what we are overcoming each and every day.

@ everyone: I want to write a narrative on "Chemo is not for sissies". MOST IMPORTANTLY, have you all simply paused for a moment and given yourselves a big "self compassionate hug" on how brave you are and the fears you are overcoming with every breath??? I'm slow, and certain most of you are way past me in this regard- but, just now, I stopped my mind chatter and realized that I am being so courageous in fighting this battle- waking up each day ready to fight for the next 24, blasting through my vulnerabilities by showing myself during this wicked treatment, and perhaps, without even knowing it, giving others a reason to fight their own battle by "showing up" in mine.

You are ALL such capable, loving, kind human beings. If you forget that, ask me to remind you.

Cheers to Monday.