Starting Chemo September 2015; join us!
Comments
-
oh my gosh Annie that's terrible what happened. Thank goodness you had that call button in your hand. If you decide to get a port it truly does make infusions go easier. I also would want to try to stick to the same chemo and not start over unless it was absolutely necessary. I can't imagine starting over with a different chemo.
Southern thanks for thinking of me. I did finally get the meds for my heartburn/ acid reflux late this afternoon. Feeling slightly better. Throat is burning less harsh than this morning. Still coughing a bit when I swallow. Trying to eat soothing foods like vanilla ice cream and mac & cheese. No acidyfoods for a while. Just need the meds to work quick so I can feel better to get my 3rd infusion wed.
0 -
Yup dad hugs are great. Mine is 89 and can still make this 45 year old feel better, and I'm his baby. He has made it thru open heart surgery 6 years ago (with pacemaker) and knows a bit what's it's like to be frustrated being a patient.
0 -
ok period stopped a couple days ago and I think it just started again. You've gotta be kidding me!
0 -
oh how i have missed catching up with everyone the last few days! I cried, I laughed, I related, I am so thankful for my new friends here. I too, could not go through this battle without others who, real-time, really understand!
i enjoyed the discussion about FB. I have not publically posted about bc because some of my clients ar my friends. still trying to decide
I attended a AC workshop offered at my local Cancer Center where i go for chomo, Look Good Feel Better. I met 6 other lovely ladies in varying stages of BC and one lovely old lady with bc and lung cancer. i feel so lucky. We got over $200 of quality make-up, learned some things about make-up (most of which I knew) and had fun with scarves and wigs. We talked about the buzz, most of us had done it one had not and she was struggling too like many of you. I think it helped for all of us to share our challenges. Some seemed so lost.
The taste thing is getting worse this round, I force the protein and veggies. Watermelon is heavenly to me!
Tried this sassy reddish wig today, (I already have a brown/carmel highlights one like my hair) and loved it! So different for me, not sure I will order it but it pushed me out of my comfort zone. My real hair was/is pure white so not sure what I will do when it grows back. one day at a time! Love the lint roller!
My hugs and good karma to all of you!
0 -
Wow, scary about the reaction, Annie.
Well my day turned upside down quickly. It was just supposed to be a quick check on the biopsy site by the nurse at the outpatient imaging. But when she had the doc look he was all concerned that it showed signs of infection. And then got a little more unhinged when I mentioned chemo starting on Wednesday and basically said that probably wouldn't happen. I almost lost it then. It's already been delayed once because of the second biopsy. So to go through mental preparations again for another delay was really hard to accept. He called over to my MO and also called my ob/gyn to get her to prescribe some oral antibiotics. So then I had to go see her. Then I was texting my surgeon the latest, so now I go see him tomorrow.
Chemo might still start Wednesday. The MO wants to proceed like it will. Wednesday we will see how I am feeling and probably what my labs look like.
So very stressful afternoon for me.
0 -
Annie I'm so glad your folks came over. You're right, sometimes only Mom or Dad will do. Here's one from me too.
0 -
thank you. All of you have been so great. Thanks!
0 -
go southerncharm! Some anger is your right! you are clearly brave and strong!
0 -
Southern, you're my hero today.
0 -
The more Jim and I talk about it the more we are convinced she caused my problems today. She was blasting that taxol drip 3 times faster than last time and with way less saline. I'm so angry! I'm just so pissed! She hurt my putting in the IV which hasn't happened this whole cancer nightmare then she did the infusion too fast. I'm just in an effing rage over it!
0 -
Annie: that is so scary...glad you are better now thanks to your Dad's hugs. I am so sorry this has been tough for you.
Skittles: I had my chemo delayed because one of my surgery sutures took a long time to heal (though it never did get infected). BS and MO were consulting every day about it I think. I was glad to know they were in sync. It does suck to have to wait!
SC: oh, so sorry about the hair. I wanted to buzz mine this am but ran out of time before chemo. Now I feel like waiting another day. But those were some huge clumps that came out!
Wish I had energy for personalized notes to each of you, dear September group, but I am on the couch recovering from Round Two. I feel tired but otherwise fine. I had a bit of anxiety when they started the Taxotere (yes, unfortunately, I had read Annie's post by then :-( ). But is was fine for me, knock on wood. One hint: my arm felt sore when they started the pre-chemo drugs, and when I mentioned it to nurse, she put the heating pad back on (she had already used it to warm me up for IV insertion: I don't have a port either but my favorite nurse did the poke and did just fine)..anyway, it did the trick for the soreness too.
So really I have nothing to complain about. I really appreciate your hugs and support on my hair stuff. Wish I could get angry like you Southern, it would make it easier. But I am just very, very sad...
Hugs to all of you tonight!
Octogirl
0 -
Annie, I'd seriously consider mentioning the issues with the nurse to your MO....
Octogirl
0 -
I had my first chemo today. Very thankful I was able to get started because last week my liver enzymes were high. Much better today. I am on a dose dense regimen, 4 treatments of AC (too lazy to get out my papers right now for full name) and 4 treatments of taxol. I was offered a choice of a lighter regimen ever 3 weeks for 12 weeks but the tumor board leaned toward dose dense so I am going with that. I would have liked to hear the difference in predicted survival rate for me but I don't think they have that infor. I am stage. IIa my signature shows my tumor as 1cm but it was 1.8 I had one positive intramammary lymph node, they removed 6 axilary lymph nodes, all clear.
My oncology dr wants me to quit my Celebrex to give my liver a break since it has to process the chemo. I had to get off it for my mastectomy and the first few days were awful but I think I felt better after being off a week. I don't know what to do. My liver enzymes were better I just took my seraquel down from 100 to 50, but I added 2 doses a day of 50 Xanax. I also quit my diclofenac (prescription NSAID) and my ibuprofen. The MO says Xanax is not too bad on the liver.
Well, that was a lot. Any advice about the Meds is appreciated.
0 -
Well my big day which was to be tomorrow is also postponed. My oncologist has been telling me it is up to me to make the decision as to what chemo to take. Gexmar or Taxol along with Carboplantin. He says the Gexmar and Taxol will do the same job. ???? (I am not sure I have Gexmar spelled correctly) When I went to Lehigh for a second opinion, the dr. there suggested the Gezmar with Carbo but my dr here at first suggested the Taxol. Now he is telling me it is my decision.Damn!! I told him you are the Dr. The nurse who has been with the Dr. 23 years said if it were her she would take the Gezmar as long as the Dr said they will do the same job. The Gezmar has less side effects and guess what, you won't lose your hair with the Gezmar. Well too late I already bought a wig. :-)
So I decided to go with the Gezmar. Anyone else here know anything about this. And I couldn't get the treatment because he said my port was still too tender. He suggests waiting 5 days after having a port put in, which makes me wonder why did I have an appt today to start the chemo. Frustrating enough to have to do this but then to have all these indecisions. It is spelled Gezmar :-)
0 -
Grey
I understand your fear. Even though I too am fearful, today when the Dr decided to extend the day to start the chemo I was sort of disappointed, because I want so much to get this started and I think my stress level will be much much better.
I think you will feel the same way once you make the final decision. And when I went for my port I told the anesthesologist to give me some of the good stuff. :-) And he did. :-) You will be fine with the port.
Good luck to you and God Bless. We can do it. You know you can.
0 -
Without a care person there they might not put the port in Grey.
0 -
grey, I think it's really variable on whether you can work or not. A lot depends on the type of work you do and the extent of side effects you get. I'm getting TCHP. I have an office job and I worked full days in the office on days 4 and 5 which was a Monday and Tuesday. I worked part at home and part in the office the rest of the week. If I had to I probably could have been at the office the entire week but I was very tired and it was a long week. Weeks 2 and 3 I have been at the office full time. I was lucky and had fairly minimal SE the first round.
0 -
anne43, I am so sorry you had a rough chemo session # 2. Glad you quickly recovered.
Grey, I am proud of you for getting back in the game, and making all your plans. You can do anything if you put you mind to it.
I am all packed and ready to start in the morning! First the port and than the chemo. Tried to clean and get house organized for a few days.
Thank you for being here and sharing your experiences!
0 -
You are all doing a great job of cracking me up. I hope round 2 went well for those facing that. I'm dreading it and mine's not until next Monday! Right now I have energy and am feeling pretty good but my tongue and mouth are acting up a little. I've been swishing the baking soda salt nonstop to try to calm it down.
So long to all your lovely hairs.....my very short hair is still with me but I'm on the lookout for any that jump...will keep you posted.
Taste buds are flat and I'm eating strange things that might taste good. (NOT)
I got a script for the heartburn - take it first thing in the AM. Will see if it helps.
With all this strange eating I'm glad I have long stretchy skirts (sweat pants without a crotch) for work because my pants are pretty darn tight. :-(
Thanks for all the updates! You are all doing such an amazing job in this fight!
If any of you are interested I wrote this blog yesterday morning. It's about trust and how it really rules our lives.
http://deedyp.blogspot.com/2015/09/trust.html?spre...
0 -
I'm going in this morning to talked to the MO about what happened. I'm going to try and convince him to try again with the taxotere on a slower diluted pace. I'm also never getting that nurse again. I didn't sleep all night thinking about it. I'm so angry that someone in that position would be so inept. If she didn't feel well she should had a desk day or gone home.
0 -
Jabe I had the same thing last week and this week. Last mon 3 days of spotting then this weekend started sat -mon. Weird. Gonna ask mo about it when I see him tomorrow before chemo.
0 -
southern hugs to you for being strong to buzz. A strong attitude helps with the buzz. Hold your head up high and look them right in the eye if anyone gives you the look.
Annie good for you to tell your mo about the nurse. I had a nurse push my adriamycin too quick last week and I was really sick. I tried to tell her and her response was well you shouldn't be sick. I asked to take a bathroom break between pre meds & adriamycin & then before cytoxin. The nurse seemed like I was taking too long and she needed to get off her shift. She also said I shouldn't need prescription anti nausea meds after chemo cause the premeds last 3 days. She even called my mo to ask but he told her I could take the prescription before day 3. So I am gonna tell my mo about the infusion problems tomorrow and ask for my original nurse.
Sailor feel better with the heartburn.
Hazel I also take Celebrex. Mo said I could take that along with my regular meds. I am on the same chemo as you. I guess it depends on your mo and medical history.
Octo hope you feel better.
Lila glad to hear the look good feel better class was good. I go next month and am worried I may be the only baldie there.
Scotland I may be jealous you have a small head. I feel like I have a big ole Barbie noggin. For wig size can you measure your head? Maybe a petite wig or even a kid size would work?
0 -
So it's my first day of chemo. 😁 Just wondering how many of you are working and how many days after chemo do you go back to work?
0 -
Aga...everyone reacts differently so it's hard to say. My first round knocked me out for the first 3 days then the second round didn't really hit me until day 4. Expect fatigue to be your biggest challenge for work.
0 -
Good morning ladies!
Ugh, the hair. Or should I say lack of it? The patchy half buzzed and half bald is NOT a good look. It's really hard to look in the mirror. Plus my head really hurts.
I wish everyone a wonderful, anxiety-free day!
0 -
Grey &Aga: the whole what to expect/how do I plan my life around chemo thing is maddening. We all react so differently to the chemicals that the best we can do is get a broad range of what we might expect. So broad that it's not helpful for planning purposes. I got the fever/cold medicine/ stoned kind of feeling when they started the steroids during chemo, and that feeling stayed with me for 3-4 days. My brain was sluggish, and I was fatigued. When those chemicals left my system, I was just as fatigued but it felt more like jet lag. In many ways, I was pretty functional. Work was hard because I'm an editor. Sitting still and focusing on words and punctuation has been difficult. Yesterday (Day 7) there were periods of improvement. At the moment, my brain feels pretty normal. I had six doctor appointments last week. The fatigue made driving challenging, and I was never more than 10 miles from home. This is the kind of fatigue that no amount of sleep can remedy. That's what happened to me. I've been exceedingly lucky in that I haven't thrown up or had diarrhea (yet). Every day is a new adventure.
Shopgirl, they tried a petite wig on me and it seemed to be OK. I still have all of my hair, though. I have a lot of hair.
My period is trying to come. I'm rooting for it, if only so that my husband and kids don't have to deal with ChemoPause Mom. I suspect none of us will care for her very much.
0 -
WOW, did this thread fly yesterday!!
soscaredhubby--you are awesome. I love the fact that you're so involved in your wife's diagnosis and care, and from that picture I can tell she is relying on you as her rock. She is really blessed and we all cheer for you! I'm on the same regimen and about 2 weeks ahead of her, if you need specific questions. Give her a big, gentle hug from me.
SouthernCharm--oh, hon. I wish I could give you a big hug. Good for you for just going ahead and buzzing it. I did it two weeks ago so I didn't have this "is it time? How bad is it?" angst everyone is going through. I didn't want to give the cancer the satisfaction. LOL But it's still a shock and takes some time getting used to when you see your reflection. I can honestly say that in the last few days I have gotten to the point that it doesn't completely startle me an it's not upsetting. You are NOT a mess; you're having a completely reasonable reaction to the totality of the stresses on you. Let yourself have it, love.
octogirl--hang in there! Remember that as bad as it feels... it is going to improve in a few days. Wish I could be there to hug all of you in person.
greytmph--I'm really concerned about you, sweetie. I know that there are a number of programs out there to provide drivers or companions for cancer patients; would you be willing to look into those if we could help you research? You really CANNOT drive yourself home from the port procedure. It's dangerous to yourself and to everyone else. And you also deserve more than to do this alone. You don't have to be, and we will help.
And have you spoken with your therapist about the incident on Saturday?
My mom arrived as a surprise late last night after a USDespair debacle getting here. She wanted to see her baby and spend time with me before my sister also starts chemo/radiation simultaneously next week. I can't imagine what it's like for a parent to have this happening to two children. I'm glad that she came on day 12 of the cycle, when I'm feeling relatively good, as I think that is a little less traumatic. She'll be here long enough to see Chemo #3 on Thursday, the aftereffects, and the eventual semi-recovery. I think this will be a great help in preparing to help my sister through it, so this is a good thing. Nothing like reality training, right?
0 -
It is day one after Chemo Round Two Zero Day and I am heading to work. In fact, I've already been working from home for half an hour. The steroids make it a little too easy, as a matter of fact (just don't make the mistake I did when trying to talk out a staff issue with someone who reports to you during that time frame: I got way too talkative :-( :-), it was both funny and sad.) So yes, depending on the TYPE of work, it can be done. However, BIG CAVEAT: I have a desk job, MY SEs have been relatively minimal, I have not had an big D problems (if I did, no way I would have gone to work, but I tend to have constipation which is not the same issue of course), and I also have flexibility and could have just left if i needed to. Other than treatment days, there was only day I really couldn't work....I was having vision issues and couldn't read a computer screen without feeling dizzy. I had to lie on the couch with eyes closed almost all day. That was Day Five. However, there was really bad smoke in the air that day from forest fires, and I am sensitive to wood smoke, so no idea if it was the chemo, the fires, or (most likely) a combo of the two. Ask me again after day five this time.
I do credit keeping active with helping with the SEs: it is advice I got on this board and walking a mile a day or more almost every day before and during (yes, heading out for my walk shortly) really helped.) I do a loop around the block over and over and in the nearby cul-de-sacs so that I am never far from home if something hits. There is a great thread elsewhere on the board on Exercising and Feeling Good before, during and after treatment that really helps me.
Everyone is different, but work may be possible. It is certainly worth trying.
One more SE note: last time the steroids REALLY robbed me of sleep for three nights, and I was horribly sleep deprived. I talked to MO about reducing the dose but he pointed out (correctly, I think) that since my SEs were otherwise so minimal that reducing them might be a case of 'If it ain't broke, don't fix it'. Rather, he encouraged one ativan (which he had prescribed and which I hadn't felt the need for from an anxiety point) before bed. Did that last night, worked like a charm.
Good luck to all in your post chemo recovery! More later
Octogirl
0 -
Annie, so glad you are going to talk to MO! Was the nurse sick? (I missed any reference to anything other than her being grumpy, if you mentioned it earlier)...even the possibility that she wasn't well was a REAL reason for her to stay away from you. Yes, by all means tell the MO she can't help you in future. That is not ok.
Sailorgirl, I've gained seven pounds since I started chemo. Might be the steroids (?) In any case, I am not worrying about it until I am done with this phase. Sadly, mashed potatoes and gravy tasted decent (not great, mind you, but decent) even during the worst of the phase when everything was metallic to me. The only thing that didn't taste metallic to me was vinegar, but how many pickles can one eat ? :-)
Octogirl
0 -
Good Morning Ladies
As I posted yesterday about the Dr changing my treatment from Taxol to Gezmar. Anyone on here who can fill me in as to what they know about the two. Anyone taking Gezmar. Really appreciate any info
I hope everyone has a good day.
Rosieo
0
