Starting Chemo in April 2014
Comments
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It's very easy to jump on the "anti-chemo" bandwagon until you're faced with it. I am a very strong believer in a nutrition based approach to help in the battle against cancer, however I am also a very strong believer in doing anything/everything I can that will enable me to live a long healthy life and to be here for my family. I have taken a position where if you can show me that it can likely help my fight, I will do it. A good friend said it best when discussing some naturo-path extremist friends of mine, "You've got to embrace both schools." And that's what I'm doing. But we can't hold it against people because their viewpoints are different. If they didn't care, they wouldn't say a word. Try and remember that.
Day 8 and I'm battling diarrhea bigtime. Starts with constipation, then the Senokot and now diarrhea, talk about full circle, lol. I am thinking it's more that my digestive system is just in a tailspin than it being the actual chemo. Next infusion I am going to discipline myself more towards a bland (chicken/rice) type diet. And maybe no more ice cream, lol. I took off work yesterday and today. Today a bit better - actually ran a couple of errands... before I had to run home to the toilet anyway, lol.
COLD - I miss you! You okay?
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Yes, that John Hopkins hoax made me upset yesterday
I know people have great intentions, but it really bothers me when people automatically believe what shows up in their google search results rather than excellent research studies. I really might make a facebook post on what constitutes great research and if you want to send me an article on cancer it better meet the criteria! The public needs an education! And I need a break from the nonsense! -
Football- I just got my period too, but I'd like to have functioning ovaries at the end of this so I was happy
And I just wanted to say after my research rant that of course we should all avoid known and suspected carcinogens.... like shift work! Afterall this I am going to find a new job!
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I have been lurking and reading Ladies! You all make me laugh and cry and feel not alone. I haven't had a chance to actually post, because Life always interferes. And this is good - it makes me feel Normal, you know? We are wrapping up our Homeschooling year, and our Facilitator comes next Monday to review what we've done, and I've been scrambling trying to REMEMBER what we've done. Curse you, Chemo Brain! I can barely remember what I ate for breakfast this morning. lol!
Longisland - I'm still here! Just...phew! Round 3 lives up to it's reputation, I'm telling you! Nausea still hovering (albeit MILD nausea, so I can live with it), EXTREME fatigue, all sorts of digestive issues, body aches and pains, low-grade fever at then end of week 1, and new this time, mouth sores and a constant burnt tongue. I'm like the poster child for getting every single SE you can get, right?
And Ladies, the whole bald thing? Isn't it UNFAIR how men can wander around all bald and no one suspects THEM of being "sick"? I see all your bald pictures and all I see are gorgeous women with big, beautiful eyes, striking cheekbones, and brilliant smiles. It's a SHAME that bald on women is such a social no-no. People are missing out on such beauty. BOO.
footballnut - I love your comment about lodging a complaint. Wouldn't it be great if there was a Chemo Complaint Line? Ha ha ha! That would be one busy call centre, right?
As for all those ridiculous comments people around us make? Some people don't know what to say, so they fumble. But they mean well, and we can be the ones to teach them the best way to react and respond. But SOME people are just STUPID. And NOSY. And we should feel sorry for them, from afar.
A few posts back, Longisland mentioned that no one had told her they're proud of her for the way she's handling this. And that STRUCK me like a bolt of lightening. I am so blessed to have friends and family tell me that on a regular basis, and I completely took it for granted. But no more. SO, like Longisland, I am passing those words on to all of you Ladies. I am so PROUD of YOU. I am PROUD of US. We are FREAKING AMAZING!
Sending a Virtual GROUP HUG to you all!
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chicken and rice will constipate you more won't it?
I have the same problem. It ain't easy. I take 3 stool softeners a day and at least one dulcolax.
I hate all of these pills so I've been trying to eat a few prunes instead and thank goodness I think
things are smoothing out. We have to figure out the right amounts for us. The diarrhea I was getting was worse than the constipation if that is possible.
Where else could we discuss this without blushing? lol
BTW my husband who is always regular as a clock, has been having the same problem!
that's why I looked up how chemo affects those around us and found out that it does!
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ahh the constipation/diarrhea battle. This drives me crazy. I always start with 4 days of constipation which I end up over treating I guess and end up with diarrhea - the first cycle it was really only about 48 hours of the D but this time I had it for 4 days - not really bad D - but there enough to prevent me from going out of the house for much time at all. Not looking forward to this part getting worse with cycle 3. I hate all the pills too - drives me crazy as I generally don't take pills. Now with battling this UTI I am taking and antiboitic and wondering how that is going to mess with my digestion which just finally seemed to get back close to normal.
I too am getting alot of messages from friends on how bad chemo is for you and why am I doing it if they got all the cancer. I know they have good intentions and just really care but don't they realize that I KNOW how bad chemo is LOL. We live it. I have written a paragraph about why I am doing chemo and i just copy and paste it back with the standard "thanks for your concern". I am thankful that they care enough to write to me but it does get annoying.
Sending all my wishes for SE free days
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I have one answer for such friends. Steve Jobs.
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Timbuktu: I am so glad not to be the only one experiencing these comments!!! I mean - stop chemo. Don't do chemo - it's only reducing your recurrence risk by 10%. Well, if someone told you you could cut your risk by 10%, you'd do it, right? Then the conversation totally changes. And, all the people with zero medical knowledge who want to give you advice.
Your pic and writing is awesome Footballnut. You're going to be my hero, I think.
And if sugar is feeding my cancer, I'm in big trouble because that's the only thing that still tastes worth eating. Well, and bread and cheese. So I'm going to eat. And I'm going to do my chemo. And I'm going to kick cancer's A$$ because that's what we all have to do to get back to living the life that was interrupted with all of this nonsense. Best wishes Mompv!!
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Well said, Jhodro!
I'm happy to say that I haven't had many thoughtless comments thrown my way, but I do get lots of looks when I go out wearing a scarf. I can live with that.
When it comes to food, my philosophy is to eat what I can handle. I figure between the wonky taste buds and the digestive system that can't make up its mind whether its constipated or urgently needs to be emptied, I should eat whatever I can manage to get down. No guilt whatsoever.
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jhodro thank you for ur kind words!! Funny I am getting junk food cravings like crazy!
Together let's grab some sugar cubes, toast life and pop them in our mouths and enjoy!!
Lol
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I'm back! Sorry I haven't posted for a few days. I had chemo on Friday and my sister from Calgary came down to help me out. I haven't seen her since my mom died in December so we had a lot to get caught up on.
I read all the posts and you all are so inspiring and beautiful. Thank you for being so uninhibited. I'm tired of being treated like glass.
Not much else going in here except I saw a cardiologist today because I've been passing out or almost passing out frequently the first week post chemo. So frustrating. Otherwise, just trying to wrap my head around the stage IV diagnosis. Carrying on.
Die little f#*%ers, die. I love my new mantra and have been using it
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Hi all!
Today was round four of A/C. I am now DONE with that crap! Hallelujah! I start Taxol in two weeks. I decided to make a list of 'silver linings' in honor of completing my A/C. Here goes...
1- I have had some of the NICEST nurses on the planet taking care of me.
2- I have met some really nice women at the cancer treatment center.
3- My DH has been spending much more time working at home so he can spend time with me.
4- I have wonderful friends that call and stop by to check on me.
5- I found out that I have very caring neighbors. They come and help me with my horses when DH is away.
6- When I am out running errands, people have been more courteous and friendly- probably because of my bald head! Lol
7- I have become more brave about everything.
8- I have learned to speak up and ask questions. Nobody is a mind reader. If I don't tell them-who will?
9- My oldest daughter has been regularly bringing me big containers of her fabulous homemade chicken soup!
10- I found this website and met all of you FABULOUS women who support each other!
There are a lot more things I could add but I'm starting brain fog. Lol. Tomorrow. When my SE's start and I'm feeling cranky, I will need to be reminded of my silver linings. Lol
Wishing you all well, hugs, lilyrose
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Met with a new MO today...I think I'm going to make the switch! His office staff was going to verify that my insurance is ok with the switch (I guess he does need to get paid, right?), then I'm officially his newest patient
I feel sort of bad about switching...I'm loyal to a fault, and I know my original MO was a good doctor. But waiting around three hours in his office before my infusion was just too much. My new MO has a much smaller practice, and it's a new office, so not many other patients. His office has its own infusion room (two chairs versus 40 at the hospital), and he shares his practice with the radiation oncologist my surgeon referred me to. The nursing staff seems very efficient, kind, and very much invested in their patients. I'm happy! Although I was secretly wishing my new MO would suggest not going ahead with the dense dose Taxol, I understand it is standard care, and I just need to get it done. Damn those two stupid lymph nodes!
One thing he asked me about was the fact I didn't have a pet scan done. He said with positive lymph nodes he would have called for one. Is this standard with everyone here? We didn't talk about me getting one done, but I wonder if I should expect to get one. I didn't even know about pet scans...now I feel like I missed out on a something that would have at least given me peace of mind.
The infusion nurse at my new cancer center said the biggest, most annoying SE with Taxol is diarrhea, which I've thankfully missed out on with AC. I was worried about nail problems, but she said very few of her patients have had anything more serious than discoloration. This made me feel much better about Taxol. My previous MO told me to not worry about SE's until they actually affect me...I love that she answered all of my questions and concerns.
It's still going to be a crappy chemo summer...but at least I won't be spending ALL DAY getting my infusions. Yippee!
Have a wonderful evening, you beautiful girls
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I'm on Taxol and my problem is constipation but laxatives take care of that, sometimes too well.
I'm so glad you made the switch.
I did not have a Pet scan. I had a micromet in one nodewith my bc. They considered that node negative which makes no sense to me but they say that micromets don't effect prognosis
At Sloan they told me they don't do ct scans or any tests unless there are symptoms as too much radiation is dangerous.
I just had my CT scan here in Chicago. They did everything differently than Sloan did. Honestly no two places are alike. At Sloan I heard they were going to more MRIs than Ct scans.
About loyalty to drs. I'm remembering when my children's pediatrician got sick. I loved him.
I considered him the third parent. Everyone left his practice and I thought I would stay and be loyal. Until I went to the pharmacy to fill a prescription for my son. The pharmacist looked at it in
horror and said "Dr. Shultz wrote this, right?" I said yes. He said it was written for the wrong dose. He'd been doing that a lot. Of course this is a different situation, your doctor was good. But I know the pain of having to leave a dr.
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Great news Swissmiss!! Sounds like it'll be going better with the new MO. If it makes you feel any better, I have not had any problems with my nails except they grow more slowly and the D is just a bit -- usually two days after for 2 days, but if I take Immodium at the beginning of the day, for me it is ok. Best of luck and enjoy your two weeks!!
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I only received a pet this time to verify it was a local recurrence however I will continue to get them for the same reason.
. It doesn't make me so happy. So AC #3 is kicking my a$$. No other words for it. I just want to sleep, sleep and sleep some more but I have to get up to eat so I don't feel sick to my stomach. So it's a little frustrating to say the least.
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good morning!
I hope everyone is hanging in there with very little SE today.
swissmiss - sounds like a good move to a new doc and infusion centre. I couldn't imagine waiting three hours. My max wait time has been ten minutes except Tuesday for my neulasta shot. Busy after Memorial Day. They let me jump the line because I was simply getting a shot.
I think a PET scan is pretty standard with positive lymph nodes. Some insurance companies won't cover it. Very expensive but will order a CT scan and bone scan as an alternative. It's a really good test. Very quick and easy scan. If you have a choice, do the PET... one versus two tests is much better with all the other shit we have to go thru. Much easier than an MRI, IMHO. I had one and will continue to have them due to my mets (only two though) to follow them.
Jaimieh - sorry round 3 is rough for you. Hang in there. You can get through this. I'll be checking in.
Any one else having syncope out there?
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You ladies have been on a roll these last couple of days, as I've been out like Sleeping Beauty. Feeling ok, just sleeping a lot.
Lillyrose - your silver linings are a good reminder that there are some positives in all of this.
Swissmiss - hoping the new oncologist works out for you.
Wishing everyone a good day, as I sit here sipping on my Biotene flavored coffee...
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golfingirl- are they going to maintain your current treatment ? I agree the PET is much easier than the MRI.
So I decided that I am just going to pace myself this week. Nothing crazy like last week. I am just in the finally count down for this last AC. If I even think about it I need to take anti nausea medication no psychosomatic symptoms here. Lol.
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hello everyone!
How are we doing today? It's Thursday so I'm anxiously waiting for my rangers to beat the canadiens tonight and move on!!
Still have a bit of a dry mouth but not so bad. I started using biotene toothpaste and mouthwash. The thought of some foods is making me queasy like chicken but I can still eat anything thank goodness
Still have this constant desire for junk food but only have it 1-2 times per week
Round 3 - the last round - of FEC is wed June 11. Then on to 3 rounds of taxotere and herceptin. Time is definately moving!!
Have a good day all !!!!
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good luck mompv!
I have been told about the miracles of flax seed oil twice now - once just on its own, the second time to eat it with cottage cheese.
And people mean well, but I do get tired of being asked how I feel sometimes.
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I think I have made it through AC ladies! Day 9 post #4 and I feel a little bit better with a big side of hope
Tired and dry mouth but woohoo! I am going to try to make it out of my house today.My daughter is finally over the fever, but still clingy so I am getting extra cuddles.
Tomorrow is a pirate dinner fundraiser for the rotary club. I will be rocking my headscarf and thinking of my pirate sisters here!
Here's to an SE free weekend! On to Taxol on Wednesday!
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Jaimieh - yes, I am continuing with my current treatment. Still planning on mastectomy and radiation following chemo. They added a drug used to treat osteoporosis. It's a monthly injection that has been shown to slow bone met growth. My silver lining us I only have two mets. Statistically, less than three mets, life expectancy is greater. So full throttle! I'm glad you're taking it easy. I paced much better this round and feel stronger for it.
Football nut - I'll be cheering in your Rangers! Not much of a Habs fan either.
Makelemonade - getting asked how I'm doing is a much greater reminder that I'm sick than this cute bald head I'm sporting!
I was out for dinner last week on a patio with my peeps. It was warm so I took off my hat. A guy walked by and said I love your hair. I looked at him in the eyes and said thank you. Then I looked at my sister and asked 'what hair?'
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clarrn. Yay for finally starting to feel human again.
. Footballnut- I think the dry mouth makes things worse than normal
. I still can't believe how awful I feel today. I thought yesterday was bad but today is much worse. I want to sleep but I can't. My arms feel like I have done about 50 push ups and I am just spent. Blah. Starting to worry because after my next round I am photographing a wedding 5 days after my last AC. I need to start planning for it now.
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So, I met with the MO today and I have 2 choices of treatment. I am like wait...I have choices???
#1 Taxotere and Cytoxan every 3 weeks for 4 treatments (been told this reduces reaccurence for my triple neg from 30% to 20%)
#2 Taxol, Cytoxan, Adriamycin every 2 weeks for 8 treatments (reduces reaccurence to 17%)
I can also participate in a clinical study for Herceptin.
Leaning to #2 just for the odds factor. My odds for even getting this were slim as no incidence in the family history.
My next appt is June 5th to let him know my decision with a start date Mid-June.
I am really stressing at this point...good thing I have work or trying to anyway.
Any thoughts?????
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mompv - what is the study with herceptin ??
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Mompv - i think that decision is one that only you can make. The only thing I would ask prior to choosing is "what are the possible long term side effects from the two choices". I do know that that adrmycian can be hard on your heart so make sure that they do a echo or muga scan before you start if that is your choice.
Footballnut - yeah for one left on your first course. I have six of this course - then 12 more herceptin after that. Go Rangers!!!
Clarm!! congrats!!
Feeling pretty good today!!!
Hoping for SE free days for all!!
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The study for the Herceptin is to see if it effective against Triple Neg. Right now it is used for HER+.
I did read the adriamycin is hard on your heart, my MO said the risk is 1% I would have problems.
I hate this.....
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Mompv - you just have to trust in your own judgement on these things and not look back - I hate every decision that I have made on BC since day one but I just keep looking forward!
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Damn, third round is hanging on with vengeance. Geez! I'm back to work today which is good, but if one more person tells me I look like I'm wiped out... Yes, I've been to the mirror lol. I know I look like crap, thank you.
Heading on a road trip Sat. upstate to my niece's college graduation party. That will be good. I think getting away for a couple of days will break me out of this post-chemo mode that I can't seem to shake this round.
Cold, glad to see you're okay
I'm just too darned tired to reply individually to everyone, but I've been reading diligently and sending healing vibes to all while I chant the mantra in my head (DIE LITTLE F&*$KERS, DIE!!!)
We're almost into June, ladies! Crazy, right? But look at us!!! WE ARE AWESOME!!! WE'RE DOING IT, and WE'RE DOING IT WELL!!! xoxo
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