Anyone Starting Chemo in June 2016

Coffee-lover

LabScientist and SthrnYankee - I also take L-Glutamine. It helps with cell regeneration and also has a soothing effect on the tummy. The Chemo Pharmacist recommended that I start it now and just keep taking it. She cited studies where it does help with neuropathy. I just put a scoop in a small glass of water and chug it every day. I've been able to do that even when my stomach didn't like me much. It has a bit of effervescence. You can get it at the health food store.

It's also a favorite of body builders. We can all come out of this buff and tan!

Anonymous

Moondust, I left you out oh boy, how did that happen?...Jeez these threads are just getting to be so busy, that I always feel I have not mentioned everyone I should. Moondust, I will defo let you know how I get on tomorrow. I am aiming for perfection this time around! NO SEs at all...is that even possible? I suspect not. When is your next hospital visit? If tired then you must get to bed early. More important than anything though is, HOW is retirement going???? Do you feel a sense of utter relief and joy that you don't have to go back to work ever? How lovely for you. I wish you a long and very happy retirement with lots of travelling and a joy! Ok and some hiking too!

LJ, sorry you have not been feeling great. I had cramps on day two of my first chemo. Just like bad period pain. I took a paracetamol and it was OK after that. I do hope you are free from these nasty cramps now. I am so glad our wee Scottish children were able to get treatment over in your wonderful country? Why was that? Is it treatment we don't do here? Anyway, I thank you for being so lovely to them whilst they were over the pond. It must be horrible to not be in your own home when being treated for a condition. I suspect our Scottish kids would love your American twang and all the hats and rodeos and boots. It is nice you are still in touch with them too. Is your husband strong and good now after his treatment? I hope so.

Anonymous

CoffeeLover, Just looked that up about L-Glutamine. Does this supplement help keep immune system healthy and well then?

bbbb

Dolly ! You are fantastic! Once again your post speaks truth! I have been calling my oncologist office ALL day today to get this insurance issue worked out so that I can start chemo. I sometimes think I am crazy to push and push to get started but I know how important it is to get this chemo going to make sure there are no little "strays" hiding! Got my PICC line today and I want to use it! Best wishes for a good report tomorrow so you can continue treatment! P.S. - no one is shaving their head for me either but my one daughter insists that she is dying her hair pink in support - we will see!

Coffee-lover

Dolly - the brand I have says it supports muscle growth and speeds muscle recovery. Then it goes on to say that it plays "a crucial role in cell volumization and muscle recovery" after workouts.

This one seems like an easy supplement to add to the arsenal.

Anonymous

bbbb, has insurance not got back to you yet? I do hope you get it all sorted soon. Haha...I have lots of lovey family and friends, but it has me thinking these days, that maybe I should have had a person of my own for times just like this. Och well, maybe George Clooney will divorce ONE DAY!!!! You will be starting chemo soon, I am sure of it! And good for you having such a wonderful daughter who is willing to dye her hair pink for you. Pics will be needed of course, otherwise it never happened!!!

Coffeelover, I have been online and had a look. It is said also to help immune systems. It says HIV patients are given it to assist bone marrow etc. So, I am going to ask about this tomorrow too. I will let you know what they say.

Maybe Pepper can ask her lovely husband for us? He seems to be much more likely to know about this than we are. P E P P E R....we need you!

Dolly

revnet

I start the 1st of 4 rounds of TC tomorrow. I will be using Arctic Cold caps. I had my port put in on Tuesday and that is still quite painful.

I am afraid. Deep breaths...

Anonymous

Revnet, You will be OK. Everyone on here is OK. Your treatment will be started tomorrow and then not long to go til it is finished. Don't panic or be scared. YOU WILL BE OK!

bbbb

Ok ladies I need some advice! I finally heard back from the doctor after they closed saying yes I was approved by the insurance company but there was no way I was starting tomorrow because the infusion center was closed! It might be Monday before they can get me scheduled, if then! I am scheduled form 4 rounds, one every 21 days of Taxotere/Cytoxan followed by 5 to 6 weeks of radiation then hormone therapy. If I start on Monday my 3rd round will start on the first week of school (I am a teacher) with infusion day being the same day as open house day. Several questions as I have no idea how this going to go:

1. Am I being totally crazy to even think that I can teach school while on chemo? Dr. says it depends on how I feel but he is ok with it as long as I stay well. I teach first grade.

2. Dr. office told me they like to keep infusions exactly 21 days apart, so changing the schedule once I start is not an option. Has this been the experience for any of you?

3. I would have to put off starting chemo for two weeks to totally avoid the first week of school - is this crazy? I had the PICC line put in today and it is SORE - I don't mind the maintenance involved (wrapping for showers, flushing daily, etc.) if it is being used but having it two weeks without needing it is so aggravating!

4. Should I just start as soon as Dr. office can get me scheduled and not overthink the future as I know that things are constantly changing with this annoying cancer and every 21 days may not really happen?

I would appreciate any input. I know this seems a bit petty but I am a control freak and not being in control of this stressing me out! Stupid I know!

Anonymous

bbbb, I am a teacher too. My doc has signed me off. This is because of risk of picking up infections and colds and viruses.

I think if you are teaching young children, I'd say Noooooooo....this is time to look after YOU. In UK, we get covered for 6 months on full pay. So I hope you have a similar set up?

Anonymous

bbbb

I would also say, get started as soon as you can. Why hang around if you don't have to?

Heathet

Dolly - I may have asked you this already but what grade do you teach? I teach kindergarten. I've been off since the middle of April and the kids let out in June for summer vacation. That is awesome that your school provides 6 months off with pay. I get the time off but no pay. I am going to apply for long term disability and I'll get a portion of my pay. Because my little ones tend to carry lots of germs I'll be off work until Dec/Jan. I'll be done with chemo in Oct so I'll have Nov to recover or longer if I need it . I'm in no rush to hurry back until my immune system is ready.

bbbb - I'm so glad to hear you are approved! Those 4 treatments will fly by! I think Dolly is right it depends on what grade level you teach. The older the kids it is probably less likely they will be spreading lots of germs. My little kindergartens don't understand the concept of covering their sneezes!

Anonymous

Heathnet, It concerns me a little, the number of teachers I have heard with this BC thing. Makes me think even more that stress is a trigger for it.

I teach older kids, secondary school, but in a pretty deprived area, hence reason I am not in there just now. Yes, my employer will see me through 6 months on full pay and another 6 months on half pay! It takes a lot of stress off me. But they believe that I am of no use anyway, if I am sick or worried or anxious. So better at home away from kids and upsetting them. I think I agree. My employer is only concerned with getting me back to work as healthy as possible. So I guess I am very lucky again for all that!

Heathet

Dolly - teaching has gotten very stressful! I also teach in an inner city school and we are the only day time resource for many parents so many kids come to school very sick ! Plus over the last three years I have noticed an increase in very angry students. I don't know if you see this trend but I've had 5 year olds tear apart my room, hurt themselves and others. Seven years ago when I first started teaching in kindergarten it was less stressful on kids and teachers! We had time to learn at a pace suited for the kids that also allowed for socialization - a skill many of our inner city kids need! We are now a high stakes school ( low test scores) so we are required to teach bell to bell. Kids get one 15 minute recess a day which drives me crazy - little ones need time to play and explore. The teaching is intense and so is the time required to make lesson plans for individual students. Some 5 year olds are just not ready for this level ofintense instruction. Alright , that's my speech- I'd better get off my soap box😉.

labscientistmom

bbbb: get it started, sooner done I say! I also agree with staying off work to stay well. I am glad for disability pay and a supportive workplace to make this happen for me. My husband is the teacher here, but the hospital laboratory is a hotbed of germs and my MO says I need to stay healthy to get through this. You know if you get sick they can put of the next round of chemo? Kill off the cancer seeds that might be lurking, get it done and be well! They cut out your cancer, it's gone but you gotta clean up any lurking invaders.

Heathet: glad your infusion went well. Hope the icing goes well for the second part. I got my l-glutamine today, started taking it.

Dolly: See above, got my l-glutamine supplement that I ordered online, started taking it. Here are a couple articles I read online:

http://depts.washington.edu/integonc/clinicians/sp... and also; http://www.ncbi.nlm.nih.gov/pmc/articles/PMC338527...

labscientistmom

Coffee-lover: thanks for weighing in on the l-glutamine too. I am glad to be starting to take it. I am tired of my fingers tingly hurting, although I am glad of the icing that keeps it managable. My feet have been especially much better this week.

Dollydimple: thanks for all of your encouragement! Hope that your infusion goes as scheduled tomorrow. You have been burning up the boards today. My son went on a field trip at summer camp today so my hubby and I went to the movies, and lunch. He noticed that my scalp was showing a lot more, was worried about my getting sunburn. My hair has been coming out in spidery little nests for a couple days now, so I am going to get it cut on Saturday. My lovely preferred haircut lady is there on that day. I think I will have her cut it really short and see if I like it, then if not I can have her buzz it. I am thinking if I have to cover it anyway, might as well be cooler, and less to sweat. I will take the real hair wig I got also and put it on once she cuts my hair and see how she can style it to be more like my hair. Honestly I think I will mostly stick to my bandana or hats but its good to have the option. My husband already shaves his head, so he's on board with supporting me, but my son is like, no way mom, not shaving my head!!

My next chemo infusion is Tuesday, I go to get my blood drawn tomorrow. Did I tell you my CAT scan came back normal! yay! NO large lymph nodes to be seen, no little patches of cancer anywhere! yay, huzzah!

Anonymous

Yeeehaaaa Labscientist....I am still up as have been naughty and watching the EU vote. It is close. Yes, I did read about your CAT scan and realized today I had not mentioned it. A good and clean CAT scan is magnificent news. You must be very happy about this?

Thanks for those links about L-Glutomine. I am not sure if I get neuropathy on FEC? Do I? I have no clue, but will ask. I have not been icing hands or feet, as apparently I don't need to.

But I am asking tomorrow about aspirin and going to see if I can see a dietitian about how to eat in order to remain healthy and keep this beast away from me.

I am so sorry to hear about hair, but if this makes you any happy, even my Trump hair is starting to come out a lot more! Brushed today and lots and lots of strands in sink. You have so many lovely headscarves though that you will look lovely in them no matter what. By Christmas we will all have good hair again....won't we? You heard about biotene? It is meant to help hair regrowth. Am also asking about this tomorrow.

D

Anonymous

I have no clue, why I have not had any scans....

NattyB

Dolly -

I haven't had any either and wont be getting them unless I have symptoms. Not sure I like that but if i get a twinge of something - I'll be asking (even if the twinge is in my mind only). Congrats Labscientist - what a relief, whew!!!

Just a quick drive by - the Look good feel better class was ok but the products, wow. Chanel, Bobbi Brown, Estee Lauder, Clarins - 99% great stuff and some nice brushes too. Free from American Cancer Society.

labscientistmom

Dolly: Do get some sleep sooner or later, OK? what time is it there anyway? Also would love to hear your bit on the EU vote when its done.

If you are not taking taxol or taxotere, you shouldn't need to worry about neuropathy, but maybe the l-glutamine might protect from other side effects too. Sadly, I think it takes about 6 months after chemo and radiation for hair to come back (although I have heard that leg hair grows much faster, how stupid is that??) Did you get printed stuff on your specific chemo? You can look on the chemocare website, then look up by the different drugs. That has all the common SEs listed. I got really out of breath walking around today, but had a nice time out with my husband.

maybe your scans come later or your tumor markers were normal so they didn't feel they needed them. I haven't had an echocardiogram yet but maybe before the A/C regimen which I am not looking forward to.

labscientistmom

NattyB: free stuff is always a blessing! glad it was worth your time to go. the ACS people I met with to get a free wig were super nice.

bbbb

Thank you ladies for your suggestions and encouragement! You all gave me a lot to think about - I never thought about getting sick and having to postpone an infusion! I teach first grade so they are a germy little bunch. Now that I have calmed down and read all your comments I feel much better about all this petty scheduling mess! I am going to just give this to God and trust that He has this under control.

Thanks again ladies - I can feel the love from you all the way down here in south Georgia!

And hello to all fellow teachers! Dolly - so many teachers with breast cancer - you may be right about the stress - my job is very stressful but I do love it!

Labscientist - Hooray about the CAT scan! "Normal" is such a great word right now! My oldest son is in school to be a Clinical Lab Scientist and he loves it!

labscientistmom

bbbb: i love it too!! i miss it a lot, been off work since my surgery in middle of April. Its for the better though, got to focus on surviving this battle against the cancer meanys so I can get on with my life. ...and God's hands are a good place to put your stuff - He specialized is making beautiful things out of broken, shattered pieces in this crazy broken world. He loves you and you can stand on His promises. You will get through this, see us fierce cancer fighters. GRRR!! blessings, A

krekre

Pepper43 -- I used to have purple hair. A big patch of it on my left side. Got it when I was 42 (blue/green peacock kind of thing at the time) and kept it in for years. Purple was my "go to" color as it would stay in the longest. I've been mourning my purple just as much as my long hair, so when I'm finally able to make myself buy a wig, I'm gonna go color. Thanks for the inspiration!

bbbb -- I had high hopes of working full time during my chemo. Turns out I can't do it. Day 3 proved that to me without a doubt. Kinda handed me my butt on a platter. It was like my body was fighting itself. Wide awake, but couldn't keep my eyes open. Full of energy, but couldn't move my limbs. Took weak to cry but gosh I wanted to. Couldn't get comfortable. But hallelujah, I wasn't nauseous. So grateful for that.

My understanding is that the rounds are pretty predictable, meaning, if day 3 for you is the worse the first time around, it's generally always day 3 that stinks the most in future rounds. What I've also heard tho is that it gets progressively harder. So, day three is always the hardest in my example, but gets harder and harder each time. Not sure if this is making sense.

I think I'm trying to make a point but my fuzzy brain is getting in the way. I wish that I had prepared better or come to terms with the fact that I need to make this treatment my priority. I can't fit it in amongst the other things in my life. I might be able to work close to full time. I hope that is the case. But today I couldn't braid my daughter's hair.

So, the best I'm trying to do is plan. Taking this first week and seeing what it brings me. Planning that if day 3 and 4 are awful, next time I won't even try to work on days 3 and 4... or whatever it all turns out to be.

I think I've entered babbling territory and unsure if I'm still contributing... so signing off. Here's looking to day 5...

krekre

Argh. Just reread that mess I just posted. Sorry!

And found this on the L-Glutamine: http://depts.washington.edu/integonc/clinicians/sp...

I'm gonna try it.

Here's my purple hair (until a few weeks ago).... next pic will be post-shave!

krekre

Oh good grief. One more thing to say, and then I'll stop typing. Swear!

Moondust -- thank you for always telling everyone you'll be in their pocket. I love the saying and use a version of it myself often. Whenever I tell someone something nice about themselves, I'll say "put that in your pocket and pull it out later when you need it." When I was at my infusion, it was very nice knowing that I had a little bit of Moondust in my pocket.

Mahalo!

labscientistmom

krekre: I am envious of your lovely picture, I take lousy pics. I understand what you mean about not being able to braid your daughters hair, the other day I couldn't put in the parent ok code for my son's video game. could... not...do.. it to save my life. so weird how the chemo makes your brain not work. blessings to you across the pacific< A

Jojok

I love the wig. I was told to take Claritin if Nulasta hurts your joints at all.

Jojok

coffeelover- when did you start your vitamins? I start charm next Thursday and am wondering if I should start taking them now? I was told to do B6, B12 and Glutamine.

Question about Sentinel. When did swelling go down for all? I had mine down Friday still swollen and partially numb.

I decided yesterday to cut my hair short and have a little fun with the color. I tell people it's the color of my favorite beverage😉🍷

My kids get back from camp tomorrow and then we leave Saturday for a few days camping in the Oregon coast before my chemo next week

Heathet

jokok - I love your hair cut the the color! It's super cute. I like what you tell people!

krekre - purple is such a fun color! It looks great on you. When I cut my hair my friend added purple and I loved it! I thought why didn't I do this sooner. When my hair does grows back I'm keeping the purple. I shaved my head Tuesday and boy it gets cold fast ! I get my first infusion of the same chemo as you tomorrow. I have heard day three and four can be hard days.

bbbb - first grade ! How fun - I really enjoy working with the little ones . I'm glad you are feeling less stressed. Putting it in God's hands and trusting that the Almighty is working in our favor is a good place to be!

labscientistmom - so glad the scan came back normal! That is great news ! My bone scan came back normal and I was so relieved and happy! Waiting for results can be hard!

Happy Friday everyone!