Starting Chemo in JAN 2007

Cindy -  glad you are feeling well, but as Jan said take it easy even tho you feel pretty good.  I remember last year I was eating dinner in a restaurant 6 days after my mastectomy (with 16 nodes removed yet), and in general I recuperated amazing well.

Viddie - your hair sounds great.  Some days I want to color mine, and give it a bit of a trim, but I am waiting. I can still slick it straight with gel, so it looks like a pixie cut, so i am holding off so my hairdresser can have a little bit more to work with.

Nancy - I can't believe that about the fake effexor. I'm sure you will feel better once you get on the right dose.  I started taking mine yesterday - the Effexor XR 37.5 gm. dose, so far nothing unusual, I feel a bit tired and have less of an appetite - which would be okay with me.  Tina, maybe that's why you lost a bit of weight - do you feel you are just not as hungry?  I can't wait for this to kick in. My GP wants me to do the 37.5 gm. dose for a month, and then see about moving it up to the 75 gm. dose.

Skye I asked about taking the COQ 10, and the onc. that day (my regular onc. was away) did not advise me taking it.  But when I see my regular onc. next week at my Herceptin infusion I will ask him, he's the head honcho and I really trust his judgement.  I did my 3rd MUGA today, and the tech actually said "The pictures look very good."  I nearly fell over because as Tina said they never give you any sign of anything, good or bad, usually.  My last score was a 64, I'll see what this one is next week at the infusion.

Mel, it's great that you can work just part time. It's a big adjustment to go back all at once.

Lynn- I hope you are feeling better and that the trip to Boston was okay.

Melia and everyone - yes I think we just don't have the patience, the stamina or the concentration we had before this whole nightmare began.  I hope it will all eventually come back, and I really think most of it will, but I guess we just have to make adjustments, as frustrating as it is.

Jan - have a good time in San Antonio, enjoy the weather and the adult company.

Joni -Have fun on yet another trip.

My MIL had a set back - she was doing really well, and then all of sudden she woke up yesterday with blood in her stool so they took her back to the hospital.  She's been in ICU for the past 2 days and they've done a bazillion (love that word Tina) tests on her, nothing is showing up.  The docs are baffled right now.  It's really a pity, because she was regaining her strength, eating well, etc.  and now is back to square one in terms of her stamina.  Hopefully they'll get some answers soon and she'll be better in a few days.

Tina, I do feel jumpy, and when I sit still I can feel my heart racing. I didn't sleep well last night, but I didn't take an ativan either. I may take a half tonight, if I settle down some.

Caya, Only thing I noticed today after taking 2 doses of the "new" stuff is I have peed (cuse me) my brains out. So fluid is leaving, yes!!! My rings can spin around my finger again. I didn't realize how puffy I was. Just in time for Turkey day, I can deflate before I reinflate! We are leaving for GA. Wednesday to spend it with my brother and my other brother and my other brother. I am sure the teasing from my childhood will reconvene upon my arrival. Have to love those big brothers!   Although with me in menopause, they best be careful. LOL

Hi everyone.

I just knew our warm weather wouldn't last. Today's high was in the mid-sixties and tomorrow is suposed to be in the seventies. We'll have a cool morning or two and and bit more of highs in the 60s and 70s before we get hit with a real cold front, with lows around freezing and highs in the 40s, just in time for Thanksgiving Day. I'm sure some of you in the Northern Climes will say that it's about time we had some real fall and winter weather, but I hope it doesn't last too long.

Sure, Tina, anytime you plan to come over this way I can share some ideas with you.

Caya, I hope your mil is better soon. So frustrating when they can't tell you why, isn't it?  But I have certainly learned in the past year that a lot of medicine is best guess anyway.

I hear all of you on being tired.  I am ready for bed at 8. I am still struggling to get off the ativan and wonder if part of it is psychological. I wake up in a panic without it, but if I take it, I sleep fairly well. I wake up during the night to pee, or b/c I need to change positions, but I don't wake up scared if I take it. Now I am telling myself to just get thru the holidays and then worry about getting off. No matter how much fun the holidays are, they are a huge amount of work.

I am stopping after work today to do the big grocery shopping so I can cook and freeze tomorrow, makes TG itself more doable. The grocery shopping exhausts me, esp the big trips.

I got my hair trimmed for the second time yesterday. She just cleaned up the hairline in the back and around my ears, trimmed off some long random hairs, showed me how to gel it. I am beginning to really like it. I color it myself still, using a mild color with no amonia.  This is a hairdresser I have gone to for years, so I trust her. But Caya, I really understand not wanting to do anything too. It's so nice to not be bald.

Cindy, do not overdo, but I am so glad you are feeling well.

Caya and Skye, is the herceptin a difficult thing to do?  Physically and/or psychologically? Is anyone else on it?

Melia

Ha Tina I know what you mean about the pill boxes. For some reason I have got several laying around here. Believe or not when I first started chemo and had to get the emend, kytril, ativan, protonix etc. the pharmacy gave me one, guess I qualified for the free gift! Jeff asked me the other day if I had any hydrocortisone cream, I said "look in my chemo cabinet". I don't know what to do with all that stuff. I have everything in there from butt cream to bandages. I am afraid to throw it all out, Hazmat would be at my door! Well, guess I should get my day a going. It is cold out and my leaves have really dropped this week. I have a beautiful golden yard, and a porch full of yucky wet leaves. Didn't I just do that last weekend? Oh it never ends.. does it? I have a question...when the leaves from all the trees all finally blow away, where do they end up? I'm sorry I just picture some poor house at the end of town covered in leaves. What is this effexor doing to me???

Hi Ladies,

Caya, do ask your other onc about COQ10. My last MUGA score was 71, I found out. My onc was amazed, he thought it would be much lower, and neither he nor Dr. Clapper have any problem with the COQ10, nor does my neighbor's onc in Chicago have a problem with her taking it. I wonder why your first one said no?



Melia on the Herceptin question, I'm much like Caya. It does feel like being on chemo yet, going to that chemo room every 3 weeks. I'm also tired for a few days after. My next one is the 21st and luckily my brother is having Thanksgiving so I don't have to worry. But I'm also grateful like Caya that there is something to combat the HEr2. Still, there are a few se's such as the frustratingly slow hair growth and my peculiar se of sweat feeling like tiny needles in my skin, and the constant runny nose that I will be glad to do without.



Mery, it sounds like you are on overdoing alert! That sounds like so much on your plate, more than I could do for sure. People farther out in this process have told me it takes at least two years to FULLY recover, and I think we still need to cut ourselves as much slack as possible to promote healing, which our bodies are still doing. If you are that tired, your body is telling you something, dear one.



Amera I'm not on Prozac so cannot help you but I am sure there are some who are. I know this type of scrip is so very common among bc and other cancer survivors.



Nancy, the question you asked is easy...the leaves all end up on my lawn. I wondered where they were all coming from! :-)



DH got on his way to deerhunting "camp" after much ado this morning. I parenthesized "camp" because he and his friends are staying in a luxurious 3-br suite he got a deal on. So much for roughing it! I have DS here although I'm sure he will be spending time with Farmer Heidi, I'm looking forward to tackling projects and getting stuff done on my own, plus have a Sunday brunch planned with BFFs at the home of the gourmet cook.



And I think all that Ibuprofen is starting to work! Chest is noticeably less sore today, although I can tell all those doses are doing a job on my kidneys. Only 2 more days of it.

Happy weekend everyone - Skye

I just finished with my last chemo treatement.  I had 8 rounds, every 3 weeks.  I was dx on 4/07 had mast, of left breast but was DCI, and Invasive no nodes with onnotype 19 also.  I chose chemo because I wanted to make sure all cancer cells were killed off and second,  I was chosen to have it because I was in a trial at Sloan.  I  hope this helps.  I had a few ruff days but kept busy, did yoga and walked alot to try to keep my weight down.  Good luck to you, it will be over before you know it.  Shirley

Hi Cindy, glad you are feeling better. I remember the drains oh so well. Trying to shower without them pulling was quite the feat. They are the most painful part of the surgery. I also remember the first time I saw myself in the mirror with no breasts. I was shocked and I cried, but now I am so use to it. It's nice to just throw a shirt on and go. Matter of fact this whole thing has saved me money on bras and money on feminine products! Woohoo, I should mention it to DH that I'm not costing him so much anymore!

Thanks Nancy. I Googled Prozac and PMS and apparently it's been used off-label for a long time. I'm sure there are other, more affective, drugs out there. But I suppose that since it'll be such a low dose (she is mailing the scrip so I don't know how much) it will work without the SE's. That's what I'm hoping anyway.

My fear is that it's not just hormonal, although it does get much worse from ovulation on. Bahhh. I just do not want to deal with one more thing. However, I cannot stand to be in and out of a funk with no apparent warning. Bahhh!

And on that happy note, I hope everyone is doing well. Again, I apologize for not getting to all the posts. I promise when things slow down, I will catch up. Love you guys!

Amera

PS, when I mentioned my "chemo group" to the gyn, she laughed and said we should really come up with a better name. Anyone?

Hi Gals...

I am so interested in the discussion you are having now about chemo brain, because I definitely had it.  In fact, the day I went for my first appointment with the social worker at the oncology clinic (where I'd  been dozens of times before) I lost my way!!!!  Well...I was driving from another direction and passed it, but I ended up 20 minutes late.

However...I don't think it was an entirely bad thing.  In fact, in some ways it has helped with my drawing skills.  The visual world is so complex that the mind tends to remember via a symbolic shorthand, and most of the trouble children and people have when they begin to draw is that they draw the symbols in their heads rather than what see (for example, a stick figure with two arms, two legs, a head).  In my figure drawing class I've been doing better than ever before...I am really able to draw what I see much more clearly than before chemo....learning to draw on the Right Side of my brain, more intuitively.

I think you recover from this, especially if you stimulate your brain with puzzles and memory exercises.  But it's true, you don't go back to finding your old self again, you're a different person now.

I certainly am also more tired.  I need a lot more sleep (10 hours?!).  I got back on the ativans last September when I was really stressed with family problems.   It took most of October to get off of them, but I can say unequivocally that I am getting the most wonderful, restful sleeps I have had in a long time.  Sleep without drugs is the best sleep..now if I just didn't have to get up and go the bathroom 8 times a night!!!

Caya, Skye, Tina...I am so sorry to seeing that you are still dealing with chemo.  But the positive side of that is that it's effective & you don't have to worry as much about recurrence.   I am taking Femara and Prozac and I have very, very few SEs....just a lot more flashes but they seem to  be tapering off.  Just love the cold weather and icy sheets at night.  Amera, I've been on Prozac for two years and I love it; in fact, I was willing to change my hormonal regieme just to take it (you can't take it with Tamo).  I've even had my elderly cats on it, and they responded very favorably.

Well...you guys are so busy posting I can hardly keep up-to-date.  I've got to mind my Spa girls.  BTW, Puppy has joined us and giving us some cool advice on hair & skin.  She used to own a salon.  Yall are welcome to lurk or jump in...

Mizsissy 

Rebecca, that must have been very disappointing and disturbing for you but don't let it depress you...remember it takes at least two years for symptoms to fully dissipate, and I have every hope that my brain will return to somewhat of its former self. I can see slow progress...I've gone from staring at crossword puzzles in hopeless confusion (and I used to whip them off) to gradually getting the NY Times Sunday one although it takes me the full week. Besides, you have work, children, and other things already tugging at your brain and you're handling them in fine fashion. I really believe the rest will come back.



Cindy you sound great, and like you absolutely made the best choice for yourself. I envy the daughters and closeness, sons are nice but just not the same...you couldn't have shown a son your butterfly decorations for instance. Hope that cocker spaniel is handling the snuggle duties. :-)



Amera I refer to us as my online support group, and everyone seems to get that. Of course, they have no way of knowing the true depth and fullness of the support I have found here, but at least they know what it is. Many nurses I've had have jotted down the org site URL to give to other patients so they can find or start threads for their own times after I've told them about it.



Caya I forgot to express sympathy over your poor MIL. So difficult. I hope she is comforted a little by the Chanukah season.



Viddie I've started holiday shopping too, a lot online so far. I remember this time last year (right after the bad mammo) I had a bad feeling I wouldn't have time to make my usual art Christmas cards so I had my family pose on the deck with one of my brothers wearing a werewolf mask and had cards made at Walgreens from it. It was a huge hit with everyone. Haven't decided what to do this year.



Last night I couldn't stand it anymore; I went to Petsmart and bought a little red harness and leash, a new dog bed liner, puppy treats, and a copy of Puppies for Dummies. And there is so much more to get yet! Pets are not cheap but they are worth it. The hardest part was resisting buying tiny dog Christmas costumes. Little red and green jester suits, Santa outfits, they are hilarious! - Skye

Oh, regarding Herceptin, I really don't mind it.... makes me feel like I'm still very actively doing something about my situation.  I just hate the sticks.  Last time they got me in one stick, which was amazing.  I do hate how long it takes.  However...  only three more and I am DONE!  The next one is in the hospital so that almost doesn't count.  Then, just Dec. and Jan.  Oh, I booked tix. to Ft. Laud. for the 1st week of Jan. as the kids are off school.  That will be my end of Herceptin celebration.  I want to house hunt too.  Not sure if we will end up there, but...  I want to.

Happy Saturday my sisters,

I call you guys as 'my girls'.  I used to say 'my online girls' but don't  need the online part anymore because everyone knows.

Regarding chemo brain.  I think the thing that I feel most is I'll be trying to make a point and don't really say anything.  This has happened a few times and the person I'm talking to has no clue.  Not sure if I'm missing words or if I just can't get my thought into a viable sentence.  Pretty frustrating.

Mizzy, that's great you were able to get off the Ativan. I honestly don't think I'll ever be able to sleep on a regular basis without drugs.  I don't take a pill every night, but do 4 - 5 times per week.  I had sleep problems before this bc and tamoxifen.  If taking a pill gets me to sleep better, then that's what I'll do, just like the tamoxifen, if that I what I need to do, then so be it.

Hugs to you girls still on Herceptin.  What a wonder drug!  Sorry you have to take it over such a long period.  Glad the side effects aren't as bad as the chemo.

Cindy, glad you are feeling well.  If I decided not to do reconstruction, I would still have the proph lb mastectomy and be breastless.  When I had my 1 year cancerversary, my emotion was my hate for this nightmare.  I hate the cancer, I hate what it's done to my life and my family, I hate that I'm so distracted with it and chemo brain, but what I hate the most is having one breast.  I now have less than a month of having only one breast.  My surgery is Dec. 10th and I can't believe I'm going to wake up with 2 breasts.

Tina, sorry to hear there are no jobs leads yet for your DH, but reliable references are a good thing!  Florida in January...nice!

I had my pre-op w/ PS yesterday.  We walked out and my dh says 'wow, he is really good'.  He is just so knowledgable, answers your questions and draws you pictures so you really understand what he's describing.  I just really really like him.  My surgery is Mon Dec 10th, he said I'll probably go home Friday or Saturday...wow, that's a long week in the hospital.  I'll be having one side immediate and one side delayed DIEP.  He said it's more complicated doing the delayed side, especially on radiated skin. 

I then went across the street to the hospital for the pre-admission testing.  While talking to the anesthesiologist, she asked about nausea after waking up. I said I do have a problem with that so she asked if I've heard of Emend.  OOOHHHHHHHHH, as a matter of fact, I have..that wonder drug I had during chemo.  So I got a script to take 1 pill 3 hours before surgery.  YAY!

The only time I've ever been in the hospital for any length of time was after giving birth to my children.  I think the bag I packed for this would be somewhat different.  Viddie, what did you bring to the hospital? I assume I'll just wear the hospital gown...so the only things I can think of is slippers, robe, toothbrush, hairbrush....what am I missing?

I got my hair cut for the 2nd time this week, she also colored it for the 2nd time.  She asked if I wanted her to throw in a few highlights...I responded that not this time, no reason to be fancy jsut for me to be recovering from surgery for 6 weeks.  So I already made my next appt. w/ her in late January, then I'll get highlights as a treat!

I'm about 2/3 done with my XMAS shopping.  I need to be all shopped and wrapped by 10/8.  So I'm going to try to finish tomorrow and then wrap during the Pats game tomorrow night.  That will be a huge relief.

Hope you all are having a great weekend...it's cold here in New England!

love and hugs,

Lynn

I am new to this thread. You ladies seem to have a wonderful bond!

 I just read a few of your comments on chemo brain.  Lynn...you said it perfectly for me.  I can tell my thoughts and words are not coming out correctly.  Very, very fustrating! Does this get better??

I am done with my chemo.  I finished on 8/29/07.  I just wondered how long this lack of memory and brain function lasts.  I do hope that it gets better.  Sometimes, I feel and sound...stupid!

Great day to all of you!!

Lisa

Caya, best wishes for your MIL.

Lynn, I'm glad you are looking forward to your surgery.

For me, my radiated side is really tight and when I exercise it feels even tighter.  I hope it turns out well for you.  I don't really mind being one breasted, in fact sometimes I wish it were both but I'll leave it be for now.

Work is more depressing every day.  I told them I am not attending the holiday party.  I will take personal time off instead. 

Now all the leaves are falling and my grass cannot be seen.  Tomorrow I'll get a workout with that.  DH is going to help.  He decided to have his holiday party at a restaurant nearby and just have everyone over for dessert and drinks after.  That is a relief.  Tksgvng is enough.  Now I have my DS' fiancee to buy for and her family I guess.  Any ideas for fiancee's family.  I was thinking of a coffee/wine/cookie collection.  It's really hard to buy for someone you don't really know.  They seem to be gift-happy.  They gave me a nice certificate for Bed Bath & Beyond for my bday.  I don't mind spending the money, it's just hard picking it all out and wrapping it, etc. 

I am really looking forward to Tksgving.  The day after will be my one year anniversary of this mess.  A friend at work is going for a breast biopsy Fri and doesn't know how I did it.  I did it one day at a time and with all of your help.  Hugs.