January 2012 chemo
Comments
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That is great Nancy. You must have been quite a sight. I think if you want the port out now, you should get it out.
Gayle
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Congratulations Nancy! I love the pink tutu! Any chance you have pictures?
My MO said I could have the port removed right away. I love her optimism! She said that, if needed, a new one could be placed. She also reminded me that if I keep it, it must be flushed every so often. I am scheduled to have mine flushed tomorrow (6 weeks post tx), before rads. My plastic surgeon offered to remove it when he does his revisions in the fall. He felt that it would save me an extra surgery. I don't know if I want to wait that long though. I guess I'll see how things go. -
Congratulations Nancy!!!!
I agree, get that port out as soon as YOU want!!
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Excellent advice, NCbeachgal - that's certainly my hope! For now, I'm getting ready to hunker down with my new lover, Pain; he only hangs around for about five days, but he a Mildred (my hot flashes) battle each other intensely for my attention and affection. I just really hate them both. Looking forward to breaking up with Pain very soon; alas, Mildred may be around for months or years.
Stupid cancer.
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NC you beat me to the Shakespear joke! I ditto that.
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After me repeating again and again to the chemo suite nurses this afternoon that this breathlessness is debilitating and getting worse by the day the chemo suite nurse had the on call dr come talk to me and check me out. But it wasn't until 5.30pm that I saw her. I think she arrived at the same conclusion as me - that I probably have pneumonitis (lung inflammation)...
So I now have to get a CT done asap (probably Monday at the earliest I guess since it's Friday night here). If it gets worse I can go to emergency over the weekend - hmmm. Hoping I can get in early Monday for the test and that I can last the weekend.
If it is pneumonitis I know the treatment is steroids but since rads can cause pneumonitis I'm not sure if already having it would delay those... Oh well, I'll worry about that later when we know for sure that is the problem.
Jenn -
Yay! Congrats Nancy!! Love that you wore a tutu to your last treatment!
Jenn -- I sent you a friend request on FB. I'm glad that the doc finally checked you out -- sorry that it's probably pneumonitis
Hope it doesn't get worse over the weekend. I'm climbing out of my AC #3 haze. Tried compazine for this go 'round and it seemed to work this time (it really hadn't done much for my nausea before this). I'm on the computer for the first time in 3 days while having a cup of tea. One more AC to go, ladies. One. More. To. Go.
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Um, our FB group and all it's posts have disappeared? has it disappeared for all of you too? Maybe someone accidentally deleted it or me while changing preferences?
If the group is still there can someone re-add me to it? If not, let me know and I'll start again.
EDITED TO SAY - Thanks Dorrie for adding me back on :-)
Jenn -
ONE MORE, KRISTIN, ONE MORE!!! #4 A/C was alot better for me than #3 A/C. Hope that proves to be the same for you!
WEIGHT QUESTION: Did you all gain or lose or stay the same? I've always been plump to start with, but lost 15 pounds during A/C. During Taxol gained about 8, so I am about 7 down, but am not hardly eating anything cuz of all these food allergies. Seems like I should be down alot. MO says gotta wait until steroids wear off, give it some time. I know it is common to gain weight during chemo. I always feel people are looking at me and thinking, "Oh, how come you didn't lose more weight?"
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Denise: I have gained 5 pounds total throughout the last 18 weeks of treatment. I am convinced I would have lost weight overall had I not been dating Ben and Jerry almost every single night, and stuffing my face full of whatever carb or sweet thing was within reach. I really struggled with what tasted good (sweet-tasting food and sugar-based items) and what tasted horrible (savory foods were especially bad). Before this, I would have gained a pound just looking at this food.
I'm giving myself another week to get through this final treatment, and then the exercise and diet begins in earnest.
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Over the past 4 years I had put on quite a bit of weight due to a couple of health problems (gallbladder stopped working was one of them), going back to work fulltime and taking on a part-time degree study load. After my diagnosis in early December and before I started chemo in mid January I worked really hard to lose weight because I knew with chemo I was likely to put it on. I managed to lose 22lbs!
Then, sure enough, I put on 11lbs between start of chemo and 2 weeks ago. During my first 9 weeks of Taxol I was putting on 6.6lbs a week from the steroids and trying to get it off before the next treatment. It was horrible.
I asked if the steroid could be cut back and it was halved 2 weeks ago. I've since lost 3lbs and am hopeful of being able to lose some of the rest of the gain before I start rads on the 18th of June. To lose I've been eating 3 small meals a day and trying to avoid snacks. I will admit to some chocolate having crept into the equation over the past weeks though and I really haven't been able to get out and exercise due to feeling so bad.
We are coming into winter so it's easy for me to have a nice soup for lunch. At dinner I have some sort of meat (protein) and lots of veges with very little carbs ie: if we are having mashed potatos or rice I will only have a tablespoon helping of that.
I'm hoping that if I can get rid of this horrible breathlessness problem I can get out and exercise (walk) again. The problem is that we think I have pneumonitis and the solution to that is STEROIDS. Vicious circle...
I used to be an Area Coordinator and Leader for Weight Watchers - so I know what to do... At this point I'm still way down on where I was before diagnosis. Ideally I want to lose another 22lbs from where I currently am sitting. Hoping to get there by the end of the year...
Jenn -
Denise-I lost about 10 pounds during chemo and am trying to maintain that weight loss. I know it was because I felt horrible on AC and lost my taste buds with Taxol. I also quit drinking beer/wine and I lost my taste for cheese, which I ate all the time. Chemo also constipated me to the point of anal fissures (that won't heal), so I have adopted a HIGH fiber diet, which I think helps with weight loss/maintenance. I'm drinking a beer now though. I'm officially off the wagon. Fell right off. That's right!
Angie -
Darn Angie, I had all the same problems as you (including the fissure) and still put on weight despite doing the same as you with my diet. Shouldn't be surprised though as my whole life I just have had to look at a piece of food and I put on weight.
With having a lumpectomy I didn't even lose weight from surgery...
Funny how our bodies all work the same but different.
Jenn -
Just got home from having my chest CT today because of this breathlessness. Pneumonitis confirmed by the CT so now have prednisone to take.
Kicking myself that I didn't open and read the report like I usually do before I took it back over to my centre because they made me an appt with my onc for tomorrow morning to talk about "what's next" and they kept the scans and report because my onc wants to "look at the scans herself". Shoot, now I'm wondering if they saw something else apart from the pneumonitis in my lungs.
I've only got one last weekly Taxol/Herceptin due this Friday. The nurse practitioner told me before I went and got the scan done that if it was pneumonitis my onc would probably cancel the last Taxol. So why do I suddenly have to see her in person??? Stupid cancer!!!!!
Jenn -
Think positive Jenn!
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We have all been through so much over the last several months - and still have so much ahead of us to deal with. I knew this wouldn't be a short ride, but is anyone else just tired? I find I'm having trouble talking with people I otherwise love and care for, because I'm tired. Of being Cancer Girl. Of explaining what "it feels like" and why my brain "works funny" and why I looked really good when you saw me yesterday in the grocery store, but feel like dying today (one word: Steroids). I don't want to talk about "what if's" with anyone but my DH, so why do people ask? I don't know what's going to happen - I don't know what's happening right now - why do you need to ask? No, I can't tell you something *you* might have experienced that would feel "like this" so you can empathize; I don't know if my chemo brain is what you feel like when you forget where you put your keys. And the lifestyle choices I make are what I feel are best for me - cutting out sugar, not drinking, trying to exercise - why do you feel the need to question them?
When did I become a social/science project? Sorry - just needed to vent a little...
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You already know I'm tired... Tired of putting on my stretched out of shape big girl pants...
I have found though that I have not faced much in the way of other people asking me things etc. Probably because I have worn my wig pretty much every single day, especially to work. People either don't know, or forget, that I am going through treatments. In fact, my boss has told me that since I stopped work a couple of weeks ago there have been heaps of people that have said they didn't realise I was still in treatment as they all thought I was looking well and had finished treatment months ago...
If I'm not doing anymore Taxol (will find out later this morning) I'll be back at work next Tuesday - with my wig on...
Got to admit though that in these last weeks when I was feeling so bad I didn't wear the make-up (pencilled brows and lashes and foundation) several days and was really tempted to go wigless so that people would realise how bad I looked and give me some work slack... :-) Makeupless worked well enough because I had people telling me I looked tired but they couldn't figure out why...
Jenn -
Nancy I know what you mean
I am now just so tired of being a part of this cancer journey and all that goes with it -
Jenn-please keep us posted about your next steps. I'm hoping for an agreeable outcome that benefits you without hindering your treatment outcomes. Take care and let us know ASAP!
Angie -
Okay, trying to bring just a little hope because GOD KNOWS we ALL NEED IT so desperately.
Today is Day 13 post Taxol...
1) Bloody noses stopped today!! SO HAPPY about this! Allergy and sinus problems still abound.
2) I did more in the last 2 days than I've done the previous 5 months combined
3) I am still going into bed at 8 pm but stay up until 11 pm able to stay awake watching TV
4) Getting out of breath still cuz of Herceptin heart stuff but also it is 95 degrees here
5) Have a 2 week break and am leaving on a jet plane tomorrow with lymphedema wraps, wigs, turbans, foobs,
Mastectomy bathing suit, natural sunscreen -- need a separate suitcase for all the extras! GEEZ!!
Almost stayed home as I had insurance but decided a change of scenery other than my couch will do me
a world of good.
HOW HAVE WE GOTTEN THIS FAR??? WE ARE AN AMAZING GROUP!!!
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We are all truly amazing - that we keep going when we really don't want to, when we're tired and sore and hurting, when we're sad and mad and unhappy and frustrated, when we're tired and it would be SO much easier to just climb back into bed rather than face the world...
I hate to whine, it's not in my nature. I think part of my problem right now is the shifting hormones. So I put on that Happy Face when I go out so I appear "normal" - but like Jenn said, I think people forget I'm still in treatment, or how the effects are cumulative, or that just because I "look" okay doesn't mean I really am...but I don't feel like I can say anything about it without sounding...I don't know, whiny? Maybe it's because I'm a social worker, surrounded by other social workers who are really, truly, caring and compassionate - almost to a fault. Everybody wants to talk about their feelings...but sometimes I just want a little privacy. I am so grateful for all of you, where I don't have to explain myself every minute of every day.
Denise - I hope you enjoy your time away from the sofa! A change of place can be as important as any medication we might be taking. Our souls are just as important as our body - have fun!!
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I am officially DONE with chemo!!!!!!!!!!!!!!!!
I have no met disease visible anywhere - and the CT report listed everything right down to nodes in all the different chest areas. My onc just wanted to keep the films overnight to look at because getting pneumonitis on Taxol is so rare!
My onc pulled me off Taxol so I will not get the last 1/12th dose this Friday.
She said that because they don't really know if the pneumonitis was from the Taxol or Herceptin we could choose to also stop the herceptin which would be erring on the side of caution however she was open to discussion if I felt strongly about it - which of course I did :-) So we are going the more "gung ho" route and choosing to keep the Herceptin going except instead of upping to the 3 weekly loading dose this Friday as planned we are continuing on weekly doses for a couple of weeks then reassessing in mid June.
I really feel it's the combination of everything with the really bad cold I had for 3 weeks that brought this on. Certainly hope it doesn't prove to be the Herceptin...
But, I'm now done with FEC and Taxol and looking forward to starting to feel better. The first Herceptin only dose this Friday should be interesting (and quick!).
Jenn -
I have lost weight on chemo but gained back a couple pounds on Taxol. It seems to make me ravenously hungry to the point where my hunger pangs almost hurt. I'm hopeing I can keep the weight off. I'm also looking forward to having the energy to do more exercise. G-d willing it will happen.
Denise enjoy your trip!
Nancy I feel for you young gals thrust into menopause. I still remember being depressed during natural menopause. The family still remembers me telling them "You are just going to have to get used to a crabby wife/mother for a few months. It will pass but we are all going to just have to accept it." I think knowing that it would get better kept me going. I still get mini hot flashes that wake me up at night and I never go out without a water bottle because even with the mini flashes the first symptom is dry mouth. Thank G-d the depression didn't last this long. My hope now is that the Tamofoxin won't bring back worse hot flashes. That would not be fair!
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Denise - Have a great trip! It sounds like you are well prepared! Maybe you can 'forget' real life for a while.
Jenn - YAY for being done with taxol!!!!!! You will start to really feel better soon. And YAY for clean scans!!!
Nancy - I know what your talking about! I'm just tired of having cancer and I'm tired of talking about it. But I'm not totally well yet and I'm not out of the woods, so I don't want to be treated like everything is fine. In other words, I'm not feeling as well as I'm looking these days. For the past six months I've been putting on the 'I'm okay" face everyday for work. Now that two of my kids are home from college, I wear this face at home too. But I'm not really okay. Physically and emotionally I'm still a bit raw and hurting. I'm really tired too. I considered what it would be like to get away, by myself, for a few days. Maybe when school is finished.
Peggy - When will you start Tamoxifen? My MO wants me to go on Arimidex since I'm postmenopausal. However, it seems that Tamoxifen has some potential benefits besides reducing the risk of cancer. I believe that it is better for bones. On the other hand, it comes with bad SEs. My sister was on Tamoxifen for 4 years, but had to stop due to very heavy bleeding during menstruation. My MO considers this medication tol be the most important part of my treatment since I'm er+/pr+.
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I don't know Jenn. My original chemo workup sheet says Tamo for 5 yrs but I haven't asked when it starts. One thing at a time.
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I'm done too! Finshed up 3 weeks ago. Finished school too, 3.3 GPA. WHoo Hoo! My brest implant surgery is July 9th and I will be doing herceptin until Jan. THANK GOD the hardest part is over. Now what to do that I have to actually deal with all these feelings of having a major illness that could of killed me. School, kids, chemo, all of it kept me so distracted and now the feelers are pouring out of me. Blah!
Glad everyone is finshing up... Good luck to ALL of you!
Katie
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Katie - Congratulations on finishing chemo, and finishing school in style (and with a terrific GPA)! So many reasons to celebrate! Stupid cancer - the gift that just keeps on giving!
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Katie and anyone else that is checking in on here. We started a January 2012 Facebook group if you are interested in joining. It is a private group so if you want to join please private message myself or Nancy your Facebook name/details. we will ghen friend request you and add you to the group. Once you are added you can then defriend us if you want but remain in the group.
Jenn -
Congratulations Katie!! You went through so much during chemo. You should be proud! You are one strong mama bear!!!!
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I still don't really "feel" anything about not having to have anymore Taxol. Today was supposed to be the last day but because of the pneumonitis I will only have done 11 of the 12 Taxol doses, just like I only did 2 of the 3 cyclophosphamide doses with FEC (I officially did 2 x FEC and 1 x FE).
This week I have felt unwell from both the pneumonitis and the "usual" Taxol/Herceptin SEs and my hubby had an endoscopy (diagnosed hiatus hernia) and although we now know what his problem is he doesn't feel well and so there has been no celebration for my end of chemo...
I'm not sure when we will celebrate since next Tuesday brings ny rads planning session and today brings my first Herceptin only infusion.
It doesn't FEEL over for me...
Jenn
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