April 2013 Chemo Group

Rosina0015

Indenial - thanks for the vision feedback. Sending you hugs!! I swear I was feeling the same way about crying. Finally I let it out and oh boy it just kept on coming. I think my body needed the release. Also, since my last treatment I've felt the same shortness of breath when Im doing anything other than bumming on the sofa. Some dizziness - Monday was the worst. It really makes me anxious, and I try to just focus on something else. But I do take some help as a last resort from Ativan. I don't want to have to take them all the time. Well just wanted to say you're not alone. Hope you feel better today!

Pattysmiles

Shortness of Breath

None

Mild – With exertion

Moderate – With normal level of activity**

Severe – At rest**



**let your doctor know about this right away



For those with shortness of breath please see the above.

It comes from this side effects worksheet that is from the American Cancer Society.



http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf



Pat

heather214

BeHereNow

I love you guys! What a beautiful group of women.



Group hug!!!

anne11595

Wow a lot going on in are lovely cancer lifes!!!



Had my chemo on Wednesday and shot today! Doing really good. Still in purple haze! High morning energy but fads as the day goes on.My daughter drove me partly home were husband met and took me the rest of the way. I so love staying at my daughter house for the nite. It's just a great break! But when Dh pick me up he was wound for sound. He spent his nite with out me trying to fix the food cost in the pizza shop. So a one hour drive home was what the hell does he think he doing. Talk to me about business one fu. Day after I had my 3 rd chemo!!!!

So I really dont know if it went well for each of us. But I know more tomorrow.



So on the sex thing it like everyone here it hard.

I had a full hysterectomy about 7 years ago . Mostly could not care less if I have sex or not. But I have it for my dh then i even like it! We have had sex maybe once every 3 week since the chemo has started. We alway said we need to talk about it as honest as we can. He need are my need when I'm ok with it! Does that make any sense to you! Any was we do have sex and just really hold on to each othier a lot. Becauce as crazy as he get I love he so much it hurt.



But this cancer thing is bigger than people know until you lived it your self. We are living it a doing the best we can so I think its great that we are as one here and love and fell for everyone here. The end of my very long running mouth tonite!!!!

anne11595

For the person who said they had a shirt that says fuck cancer here is a article some one sent me.

Www.philly.com/philly/news/20130522_did_cancer_hats_go_to_far_HTML

heather214

Rosina,

Yes, I am taking several eye drops: Restasis, Lotemax (steroid) and lubricating called Oasis. The blurriness is subtle, some days yes, like double vision. Others I just notice a harder time focusing. I wear glasses all the time (can't wear contacts). I connected it to the chemo because right after my infusions, I would notice it coming on. Hopefully, again, it won't be permanent. I also stopped taking Compazine, and switched to Phenergan/Zofran, which helped too.

monkeymom

Eye issues: I'm not experiencing any blurriness but my left eye has been twitching almost all day for over a week now. It's getting really annoying. At chemo#3 yesterday, I mentioned it to the onc and he said lots of people complain of that even if it's not an official side effect and it will go away. Not worried but it's annoying.

Indenial, I highly recommend Ativan if you are experiencing anxiety. I know you mentioned taking medicine before. This is probably one of the hardest times in your life and if you need something to help, please consider it- no reason to suffer. It also helps with nausea:) It can be tapered to wean off it. Hope it helps! Oh and I have lots of hair lots of places still too.

My bottom eye lashes thinned but started to grow back. Still have my eyebrows and upper eyelashes, hair on my arms, and need to shave my legs every few days. I have a full head of peach fuzz too. Guess everyone's hair loss is different!

indenial

Monkeymom, I had an eye twitch for 2-3 weeks after round 2... totally forgot about it 'til you just mentioned it, guess it went away without my noticing!

When I took Ativan years ago, weaning off of it took a few weeks and I was sooo incredibly anxious during that transition! So I am not sure if it makes sense to me to take the Ativan to avoid anxiety now when I know it will catch up to me when I stop the meds. I am on the fence and only have one round of chemo left but will see how I feel over the next couple days.

OK guys don't laugh but... the mild shortness of breath I had, the pains, the tight chest? I finally figured out it was due to gas! I feel kind of silly now, don't know why I didn't recognize it as gas! I didn't have gas issues the last 2 rounds, not sure why I do this time around. But peppermint tea, some yoga, and a warm bath & now I'm feeling much better. Thought I'd mention it on the off chance anyone else has this issue. 

Ahhh having a hot flash now. Fun. LOL.

kobrien

OK ladies.....Ive finally got the OK to start chemo...I start next friday at 930....I am so scared..I have great support. But I have no idea what to expect. I need some pointers on what to bring with me, what to have on hand at home... I also have high anxiety.I have ativan and left over valium from my surgery. Can I take this when I start my steriods? Ive got my wig that I will pick up tomorrrow.. I am a nurse- so hard for me to be on the other side. I hear from many people that the fear of the unknown is worse than the chemo- but knowing medicine, kind of hard to believe that. Sometimes knowing too much is so much worse. I have comfort in knowing my husband is a paramedic and my sister is a neurosurgery PA...But I am an ER nurse- the one who is always prepared to deal with OTHER peoples issues. Don't know how I am going to handle my own. I am going to always think worst case scenario and over think things 100 times!! I am a horrible patient!

I have read all of your posts and am so proud of how brave you all are. I am just hoping I can be just as brave and sail through this with minimal side effects...

Thanks for listening

Kerri

Pattysmiles

Kerri,

You will be fine.

You need to do a lot of positive self talk, whatever you would be saying to your patients you should be saying to yourself! You CAN do it.



I have no advice on the Ativan, I've never taken it,



Here is a link for side effects

http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf

I printed it out, kept it at my armchair table and noted things on it at the end of me day.



Side effect meds



Kitchen table in a bowl....because I will see it and use it!

Stool softener. (Am/pm)

Claritan (to take day of, and the next 7days after if you get a Neulasta shot-to ward off bone pain)

Prilosec- for heartburn

Miralax- constipation

Steroids( mine are day before, day of and day after chemo)



In a shoebox on my living room table (where I chill out)

Nausea meds- as needed

Benadryl (didn't need)

Anti-diarrhea meds (I didn't need)

Biotene gum (to relieve mouth dryness)



Bathroom

Biotene mouthwash,for after every time you eat the first few days.

Biotene toothpaste (I didn't need it)



Drink lots of water or other liquids to rid of toxins



Have on hand tissues (prefer with lotion) for drippy nose

Hand sanitizer wherever you go



Ice your mouth during taxotere...to ward off mouth sores (chew on ice chips or being ice cubes /icee/slushee)

Ice fingertips and toes to ward off neuropathy. (I used frozen veggies and baggies of ice-kept in my own cooler bag)



Please note not all doctors might agree with the above, so please confer with your oncologist.



Read the boards and see what is on them I might have missed a few things.

Also, consider moving over to the may chemo 2013 group

http://community.breastcancer.org/forum/69/topic/803877?page=20#idx_579



Pat

kobrien

thanks Pat.. Was just sitting here and going through the post on the may chemo boards.

Pattysmiles

Kerri,

Go to page 1 of the May board, scroll down, the moderators posted some links that I believe have some good info, in fact I think a lot of what I posted is from there.

Pat

BeHereNow

Kerri,

This is long, but I am hoping it gives you a clear picture on one person's experience. Hope it helps.

A few days before chemo, I run errands to make sure I do not run out of the necessities. I go to the bank to get a little cash. I make sure all my prescriptions are up to date. I put some leftovers in the freezer in case I won't feel like cooking.

On chemo day, I wear something that gives them easy access for the IV.

I drink 24oz of water with organic lemon juice before leaving the house and I take a stool softener. To chemo, I bring a water bottle (this time I add organic unsweetened cranberry juice), my lunch, my iPad and my iPhone and ear buds to listen to music. (I made a special mix of songs that make me feel relaxed and happy.) FWIW, I don't ice anything . If you're a napper, it's nice to have something to cover your eyes.

When I get home from chemo, I make a day's-worth of mouth rinse and keep it in the bathroom (I use filtered water, salt, and baking soda; rinse my mouth with it after meals and at bedtime. Its' cheaper than biotene and works great.)

I made a checklist that I use daily to make sure I get everything in. It has been so helpful. I record meds, supplements, amount of protein I'm getting, amount of water consumed, and symptoms/side effects. I do have a fuzzy brain these days, so this is a great tool for me.

As side effects begin to emerge, I take care of them. I keep my remedies on hand. Here's the typical course for me:

Day 1:  My sinuses start to complain. I use nasal rinse, hot compresses, steamy showers. It's the worst symptom I get. I also continue to treat my constipation. I supplement with fiber (chia seeds). I continue to push clear liquids. If I think I might have nausea, but am not quite sure, I take the Ativan anyway. No need to suffer. I usually need it for a few days. It's never been horrible, because I treat it early.

Day 2: My tongue starts to look a little white and things start to taste bad. I add apple cider vinegar to 24oz. of water and sip it until it's gone. (I do this for the first week after chemo.) This can help with thrush. I also take probiotics every day.

Day 3: I sometimes add more senna or senna-s, because I'm still constipated at this point. Fatigue starts to creep in, now that the steroids are gone. I just keep doing my routine.

Day 4-10: I continue to treat my sinuses and the mild nausea. Continue to take stool softeners and eat fiber. My meals are mostly meat and veggies. (And I rinse my mouth a lot.) I supplement with protein powder if I haven't had enough protein. Being a gastric bypass patient, I keep my daily protein at about 80g.

Every day during the duration of my chemo, I take Claritin in the morning, and at night I apply pure lanolin to my heels and wear socks to bed. This has kept my heals looking great! I use the pumice stone in the shower and then the lanolin at night.

I have both warm cozy hats and light cotton hats next to my chair in the living room, at my bedside, and at my desk.

I take precautions to not get hurt or cut. So, I get other people to do most of my veggie chopping. I wear shoes or slippers at all times (except in bed). I use hand sanitizer a lot, and gloves, too. I get tired of washing my hands, so sometimes I put on vinyl gloves to break eggs or take care of my dog. I love my gloves .

Okay, this is a novel -- sorry! It's all I can think of :O).

You'll do just fine, my friend. It does get less scary over time.

XO

Virginger

GREAT tips everyone...SO GLAD to have you warriors helping me through this....

Had pre treatment blood work and meeting with MO today....blood pressure was high today..can't remember the # but I was talking the whole time...surprise surprise...WBC from a low when having mouth/teeth issues of 2.3..today was @ 8.4...much better but MO still wants me to get 'the shot'..UGH...since my treatment is on a Friday and Monday is a holiday..i get to go to the Main Hospital for this shot on Saturday...Glad my college room mate flew in to take care of me this weekend....

Before the Dr could even say it, i told him I need to start on Clarinden ASAP...and told him how YOU LADIES told me this..he just shook his head in agreement...

Tomorrow is my HALF way point....3rd treatment......3 more to go...

Positive vibes and minimal SE to EVERYONE...

and KERRI...You got this Girl.....

BeHereNow

Thinking of you today, Virginger

daffyc

I, too, have been having really dry eyes starting on day 3/4 after chemo.  It lasts till about day 7, although in general my eyes have seemed a little more dry all the time.  I have been wearing my glasses for the first 7 days and using an OTC eyedrop (can't remember off hand which one) and it helps.  I have contact rewetting drops for when I wear my contacts which is usually day 8-14.  

I take compazine and hadn't even thought that could be the reason.  I just assumed it was from the chemo as my skin seems a little more dry as well.

And I just realized I'm a dork and haven't even mentioned this to my MO.  Duh!

hushkat

Sorry for the late replies.  I read the boards daily from my email feed but don’t have a lot of time to actually log on and post. 

Be Here Now – ((hugs))    

Teenagers – The best time to talk to them is in the car, when you are driving.  They’re trapped in a small place with you with no distractions, and they can’t get up and leave.   

Story to share – Up until the other morning, the only humans on earth to have seen my bald head were myself, my husband, my best friend who went with me for the shaving, and the hairdresser.  My daughter (17) had to get up about an hour earlier than normal the other morning to go to graduation practice.  I could hear her alarm going off upstairs but there was no movement so I went to get her up.  During the night my little sleep cap had slid off my head and was somewhere in the bed.  My bald head never even crossed my mind when I went into her room to get her up.  So I woke her up, the cat came in, I played with the cat, blah blah blah.  She sat up in bed and started talking to me and was also playing with the cat. Just like every morning.  Then I caught a glimpse of myself in the mirror and I panicked.  I ran out of her room covering my head, apologizing over and over again.  When she came downstairs later that morning, I apologized to her, explaining that I never intended for her to have to see me that way.  She said, “That’s ok Mom, I knew there was a bald head under those wigs, hats, and scarves.”  “ You freaked out, not me.”   And she’s right.  She sat up in that bad and talked to me, smiled at me, we played with the cat like we do every morning and she never even flinched.   

Heather – I still have brows and lashes, but they are thinner than normal.  I’ve been using the Brian Joseph eyebrow conditioning on my brows, and sometimes on my lashes.  Not sure if it’s helping or not, but I’m gonna keep using it.  I’ve lost about 10 pounds since starting chemo but I haven’t had any nausea.  My tastebuds are destroyed and nothing tastes good so I just don’t find any pleasure in eating.   

New side effect? – The skin on my knuckles is red, raw, dry, and flaky.  I look like I punched a wall!  Two knuckles on my right hand, and one on my left.  Treating it with aquaphor right now.  Anyone else have nasty knuckles? 

Hope everyone has a healthy and happy Memorial Day Weekend!  xoxo

Virginger

Home...Chemo went well....the left the lead from my port attached yesterday so that saved time getting infusions...did a dry run to the hospital for tomorrow's shot...going to the Main Hospital since MO's office is closed till Tuesday.....just gonna chill out today and have a nap...hope everybody has a great day and minual SE 

BeHereNow

Glad it went ok, Virginia. Rest well.

heather214

Kerri, you can do this. I too am in nursing, and yes, it is HARD to be the patient! You have gotten/will get lots of good advice on here, and remember to ask questions, even if you think you know the answers. I wish you the best of luck!

I have started having progressive chest heaviness and difficulty catching my breath (didn't we just talk about this?) this week, but this morning got pretty bad, so I went to see my PCP. They keep telling me I am anemic, but don't want to treat it as it is "not bad enough" yet. Hello? I am WIPED! Then he tells me, "Well, you know Adriamycin can damage your heart, so it is possible that is the problem." Great.. So what does he do? An EKG, Echo? Nooo. He orders a chest X-ray and tells me if my chest pain gets worse, go to ER. JESUS, I hate HMO's. Now I am really scared that only 4 cycles of "the red devil" may have caused permanent heart damage. I am being followed by a cardiologist, and they did a baseline Echo/EKG, which was fine. Hopefully, this is something else and improves. God, I hate cancer. NOT JUST cancer, but all the insidious other ways it causes problems!!!! Please think good thoughts for me.

Happy weekend all, enjoy the holiday! I think I am going to be in bed. =(

Jen987

Heather - I have been out of breath, fatigued and feeling just crappy since my third infusion last Monday and I'm not getting the "red devil". I think it's what they say are cumulative SE's. Ironic that a few of us are feeling that way this week. This has been hard on me. I'm not used to having to rest in between doing chores around the house. Geez, I use to work out 3 days a week for 2 hours. Now I'm lucky to go for a walk around my subdivision. I hate cancer and all things associated with it too. Can't wait to put this behind me. Hope we all can enjoy our holiday weekend.

MsPharoah

Jen, I think we are at the same point in chemo and I have to finally admit that this 3rd round is pulling me down. I have 3 more to go, so I sure hope that they are not cumulative. I'm so tired and don't have the energy to eat or drink....which is probably making me worse. Lost 6 pounds in the last three days. Normally I exercise every day, but not the last two. Will push it tomorrow though..have to as I know the exercise is good for me. My husband baked a cake that smells so good. Will have a big water and see if it is still appetizing. Last night, I was hungry but I didn't have the energy to chew. I am hoping that I feel better tomorrow and that we will all have a side effect free holiday. I hope that as each day passes, you feel better

Rosina0015

Heather, Jen, MsPharoh - gheez sounds like we're having the same kind of week.



My doc told me after my first infusion that it would probably take longer to bounce back after each one. I wanted to say thanks for raining on my parade, it's not going to happen to me. Well it has. I feel useless. My house is a mess. I'm a mess. Walking around the block each day is a big deal for me. I've the worst cabin fever but don't have the energy to do anything about it. DH wants to go to the fair tomorrow - I wanted to punch him for even suggesting it. I start a new chemo (taxol) on Tuesday and can't seem to cope. I should be happy I'm halfway done but the light at the end of the tunnel doesn't seem any closer. July 9th - that's the day I'm waiting for - the last infusion!!



On a lighter note - it's memorial weekend so I hope you ladies get to enjoy some of it with some BBQ and good company.

indenial

Thank you guys for encouraging me to try the Ativan... I was so reluctant but finally asked for a prescription today just in case I wanted/needed to try it over the long weekend. Well, I didn't wait that long, I had one as we were driving out of the pharmacy LOL! And I have to say, this may be the calmest & happiest I've felt since starting chemo. I feel a bit like a failure after all the effort I've put in to NOT relying on psych meds (years of practice and therapy and learning coping skills)! But hoping this will help me get through the rest of this round & the next (LAST!) one because chemo is mentally one of the top 5 hardest things I've ever had to do and it's so hard not to just quit.

Hope you all feel better, I've been glued to the couch most of the last 24 hours but about to try venturing out for a walk, hope we don't get caught in the thunderstorm coming in! I hate that you all are feeling so badly but it also is encouraging to hear that it is "normal" to feel pretty crappy by the 3rd or 4th round! Hard not to jump to worst-case scenarios in my mind & overact to ever little twinge (Ativan is helping with that at least!) Love and strength to all of you. 

Rosina0015

Indenial - So happy to hear that the Ativan is working for you. Don't feel bad for taking it, It's really priceless when we can get a little piece of mind and be worry free - even just for a little bit. I think I may pop one too after the afternoon I've had. Hope your walk peps ya up even more !!

kobrien

Pat,Katie & Heather--

Thanks so much. I know I have to do this- just so scared to do it.. And the fear of the unknown is usually the worst.. I've had a lot of bad things happen in my life,so I'm kinda a "worst case scenario" girl.. I even checked to make sure my good friend Dennis was working on the ambulance the day I get my first chemo- he's a paramedic and one of my best friends!! Guess that helps me feel in control of the situation.

I'm going to enjoy the hell out of my weekend and then start increasing my hydration on Monday and getting all the things together that may need.. Even though I'm starting now in May, I want to stay with you April ladies!!



Virginia-- LOVE u to pieces!! Look forward to our daily chats and your unbelievably positive attitude every day!! Helps me more than you will ever know!! I'm greatful to have you as a friend and sister warrior!!



With the help of this forum-- and ATIVAN, I will get through this.. I'm so glad I found these boards and you fabulous women!!

Have a great weekend all!!

Kerri

hushkat

Well you can add me to list of those that got walloped by chemo 3. Really dreading the rest and the change in drugs. Scariest is the change from every three weeks to every two weeks for treaent. I'm afraid there won't be any time to recover before they hit me again.

MinusTwo

Oh oh - I've been reading all your posts about #3.  I met w/MO yesterday and got cleared for #3.  Not looking forward to this at all.   He said "you're doing really well" - and I said thanks, I guess, but not sure what that means for someone who feels like crap.  Also found out I'll have a PET/CT before #4 to see if the tumors are shrinking.  If not - I guess he'll switch to other chemo drugs.  I'm going to attempt to get the house cleaned & the laundry done this weekend before the next cycle starts on Wednesday.

Virginger - consider taking Clairtin for a full 10 days.  I found that made a big difference with the Neulasta pain.

daffyc

For those of you moving into cycle 3, I found that day 4/5 were low days, but that I bounced back fairly well by day 7/8.  I was surprised and thought I'd be down and out till my next cycle (dose dense).  So please don't assume it will be horrible.  

A little MO story.  I saw both my NP and MO prior to infusion 4 this past week and they both praised me for doing so well.  My MO made a comment how maybe they weren't giving me enough.  Ummm, thud:)  I had to ask my husband on the way home if the MO was just being funny, he does have a sarcastic side (that I usually 'get' as I can be pretty sarcastic, too).  Husband assured me he was just being funny and wasn't saying anything that I needed more.  I did feel the need to explain to the MO that just because my labs are fine, doesn't mean I don't feel like carp in between.  I feel like this will now be the cycle that everything will be cursed.  Arrgghhh!  I will just keep doing what I'm doing and trying to stay positive.