Starting Chemo in Nov. 2011...anyone else?
Comments
-
Hi All! We are all gaining great ground since I joined into this awesome group of women! I may not post as much, but you ladies get me through the really low days. I am home with a cough & cold (don't think it is serious, but had to stay home for a overnight at the spa with a group of friends (and, of course, because of chemo and an incision line that has not competely healed, I was not going to be able to do anything pampering anyway, but at least going to read and relax was making me feel a little "normal") Oh, well. I don't want to end up in the hospital again, so in bed I stay! (not so "normal" these days).
GrandmaV - I hope you are starting to feel some relief with the new meds. Keep in touch - This is such a tough haul! But we are doing it, as best we can with help from all!! I am thinking of you!
Lori & Nel - Good luck with surgery in Feb!!!! My thoughts are with you guys for fast healing & recovery!
Lori, I know it is hard to hear there is more cancer than you thought. After my lumpectomy in September, for what they thought was a 2.5 cm tumor, they took out 5 cm., and I still didn't have clear margins. It didn't show this big in the mamogram, sonogram or 2 MRI's or a ct scan. In October, I opted for a bilateral MX. I just wanted it over. And, my second opinion put me in a high risk category for BC on the other side. I was able to do reconstruction at the same time, and although that surgery was a tough one to recover from, I am glad I did it, but, it was very scary. I know you will do well with whatever choice you and your dr's decide - getting as much information as possible first always seems to help!
Cindy - As you can see, I did have a double MX. I don't regret for a minute. I wanted to limited my possibilities of BC ever coming back, and that was the best way to do that. My BC was aggresive and was ER/PR+ . If you have a choice of type of reconstruction, get all the information you can. I had a DIEP free flap reconstruction, which used only tissue from my tummy, not any muscle. It is microsurgery, at least a 10 hour surgery & at least a month recovery. I was lucky, a good friend of mine had it done 3 years ago and talked me through every step of the way. I can give you more details, or you can email with a private message if you want & I'll get you any information I can. The more information the better choices you can make.
CHH - Hope your 4th treatment goes without out reaction. I had an immediate allergic reaction to preservative in the taxotore, so they start me off with a bag of benedryl, and I haven't had a reaction since (going on my 4th T/C of 6 at the end of the month).
We are strong ladies - some days I really can't believe I am going through all of this. Being a part of this really makes it easier - I know we will come out on top!!
Good night & gentle hugs to all,
Juanita
0 -
JTT - Thank you. I had a herceptin tx yesterday that was uneventful. I don't know if the meds are helping or not. I'm still very depressed, just not myself, but I am sleeping better. I have days when the noise is not as noticeable, but today it's been very annoying. I meet with a radiation onco Wednesday. I'm not looking forward to that. I'm just very leary of treatments now, afraid it will make the noise loud, like it was the first two weeks.0
-
Good to hear from you GrandmaV - Sorry the noise was annoying today - I really believe that if we can sleep, it helps us heal in every way! Will you continue with Herceptin at the same time as radiation? Treatments are scary, and I really hope that the noise does not get louder, make sure to ask about it. I don't start radiation till April. Good luck and let us know how you are doing! Juanita
0 -
JTT, yes, I will do herceptin and rads at the same time. I overheard a lady in the next chair to me Friday say that she lost most of her hearing from the radiation. I don't know what kind of cancer she had or what part of her body they radiated, but it just makes me worry about my tinnitus getting worse. I plan to ask about that. Maybe they can shield my head some way from the radiation.
0 -
Sorry I have been so quiet the last few days. Round 3 has been a harder one - much more nausea and way more fatigue...no surprise but just very limiting. Only one more of AC, then on to Taxol. So many comments I want to make and wish I could just hug you all...
Beth - I understand your concern about the weight gain. I haven't had any yet, but am told I may with the Taxol. Believe me, I don't need to gain anything! The hair? I don't care if people look...I am LOVING my hats and have been told I wear them well. Most people don't stare but smile. Some actually ask and that's fine. I live in a very small town and you can't go anywhere withouth seeing someone you know. Those I really care about know what's going on, so I just look the best I can and move on. Determined to not let this dictate who I am...but I still have my days.
GrandmaV - so glad to hear there is a little relief and that your doc listened to you. That is invaluable - to feel like we are really being listened to and HEARD, as individuals since so many of the SEs are individual. AND random! Praying that you will rise above this, know that it is temporary and that the noises will recede. I think it's a tough time of year to be holed-up too. Already cold, darker, etc and little color (at least where we live!)
Bahamamom - so sorry to hear your blood pressure is an issue! Don't go anywhere alone! I hope they figure it out and help you feel better soon.
Nel - been there, done that with some of the angry phase, but not too much. I still find myself startled that I am even in the middle of this! My sister just had to have an MRI due to dense tissue and my now-family-history...thankfully, it is all fine and clear. Didn't need both of us in the middle of this!
Lori48 - What surgery have you decided on? I will be thinking of you. I had a double...and never have regretted it, even though the expanders feel like hubcaps under my skin! I did NOT want to have to relive it and they found a precursor to cancer in my unaffected breast, so it was an accident waiting to happen. SO thankful for the wisdom of my docs. Long story, but definitely right choice. My type of cancer is also more invasive than ductal...definitely think through it all. My doc was all about "getting me well, and getting me beyond this." I loved that thought and didn't want to live with biopsies/MRIs constantly.
And I liked the comment about not thinking too far ahead to the possibility of leukemia...we have enough of a battle kicking BC's butt! Stay strong and fight hard everyone. I'm hoping for a better day today...and tomorrow...and the next...
Andi
0 -
Dear all, I haven't posted much, but I am still here. This Wednesday's tx will mark 1/3 of the way through Taxol. I thought my back was going to act up as a SE yesterday but I took a Tramadol as a precaution and I felt nothing afterward, although the Tramadol was pretty strong and I think I'll take a half-dose if I ever have to use it again.
I have a hard time concentrating during my infusions so I wind up flipping through a lot of magazines instead. I've been really, really scared the past 2 weeks or so (delayed reaction?)...and then found this quote from Michael J. Fox (actor) in an interview he gave for Vanity Fair that seemed like it was a sign for me especially. I'll share it with you: "If you keep thinking about worst-case scenarios and it happens, you've lived it twice."
(PS I can't remember who was asking about lack of appetite on T--Kelleysgroi? I had a thought--I can't eat when I'm upset, scared, worried, emotional. My appetite just shuts down completely. It's normal for me, so that may be part of what you are experiencing.)
Good luck to everyone this week during infusions and may we have minimal to no SE.
XO
C
0 -
FLislander--I had a double mastectomy. I had bilateral lumpectomies with radiation in 2008. I had surgery 3 years and 4 days later. I had an oncotype score of 54 so I need chemo. I opted not to have mastectomies the first time because I had just lost my mother and father to cancer and couldn't lose anything else. It sounds a little silly but it helped me deal with my diagnosis. I didn't have a choice with the 2nd diagnosis. My left breast had to be removed so I opted for bilateral mastectomies.
Susan--I too have expanders and if I knew I would get needles every two weeks for a fill, I don't think I would opt for those either. I am terrified of needles and the fills really hurt me. I guess if you don't mind needles, it is not too bad. I had radiation so my PS is taking it slow. He only puts 25 cc every two weeks because my skin many not expand. At the time of my diagnosis, I didn't know I would be getting chemo. That was found out later. So many things to think about. I am thankful that the PS could do the expanders after my breast surgeon did the mastectomies.
0 -
Beth and Susan, I have expanders too and in some ways, I think they will be what I hate most about this whole thing! I love my PS and he is very good, and I don't regret doing it, but I hate getting the fills. I get 60cc's every time in each side, and he is sure we can have all the expanding done by the end of chemo and prior to radiation. Just trying to take it one step at a time.
I'm going to request the cream they mentioned to numb my port. Anyone else use it? First one was fine but the last two txs, the nurse has used the freezing spray, and then by the time she comes to put in the iv, it has mostly worn off. I'm wondering if I could use this same cream for my fills. My right side is pretty numb from having nodes taken. Not my left though and it is so uncomfortable everytime, no matter how gentle he is. I go tomorrow and am going to ask him if that would be a safe option or if it would be in his way...I can't imagine that it would. Maybe make one step of this whole thing a little easier!
Getting ready for a nap. Fatigue has hit hard this time.
Andi
0 -
andi, i use the numbing cream for my port and it works really well. you put it on your port an hour before infusion and cover it with plastic wrap so it doesn't come off on your clothes. good luck!
0 -
andi- I also have been using the cream for my port and it takes the edge off.
Claire- yes the appetite issue was mine..and I agree I am so nerved up and stressed out right now. I am supposed to go back to work on Tuesday and I dont know how I am going to manage that with this much fatigue..but I think I may lose my mind staying home doing nothing for the next several weeks. I teach dental hygiene so I cant just sit at a desk and space out if fatigue hits..Im not sure what to do..any words of wisdom or support would be appreciated.
0 -
kelley, my 'words of wisdom' are that you should take care of yourself. if you don't feel like working and you can take the time off, then do it. you can find something else to occupy your mind, maybe? it is really hard to feel so badly and have to work. please do what's best for body, mind, and spirit.0
-
Andi - I am scared of needles and hate the whole getting stuck for any reason thing. I have had 3 treatments, so they have accessed my port 3 times. The first time the nurse was very supportive and understanding and she used a lot of the spray, and I barely felt anything at all. The second time I had gotten the numbing cream, but evidently I handn't used it correctly. I had just rubbed it in instead of caking it on as the nurse later told me to do. Also I don't know if it was really working or not because the hour had come and gone and they still weren't ready to stick me. So I asked her to spray me also, but she did just a little bit. That time it hurt more than it had the first time. Then the third time I caked it on, then added some more as the time got closer because I wanted to make sure it was enough. I asked the nurse it if looked like I had enough on in the right place, etc., and she said yes, but she didn't add any spray at all, and that stick hurt the most of all so far. So, I guess it works if you are able to predict the timing right and use it correctly, but it sure wouldn't hurt to ask for some of the spray as well. Good luck!
0 -
Bahamamom--My oncology nurse knows how terrified I am of needles. She sprays the area with numbing cream and tells me to take a deep breath. I am so glad when the needle is in. Everyone I interact with knows my fear of needles. I wish my PS would use numbing spray or something when he gives me a fill! I think I'll ask him this Wendesday.0
-
Beth - That sounds like a good idea to me. But I think to be safe, I would call ahead with that question/request ahead of time because he may just not use it there. But if you call and ask ahead, maybe they can make sure they have it for you. I just had a lumpectomy with the node dissection, so I was puzzled at first whenever I would see dialogue on here about fillers and expanders. I have sort of figured some of it out now, and that whole process really sounds extensive and complicated. I can't imagine having all that to deal with at the same time as this other stuff. I hope all goes well with your appointment.
0 -
I have a strange question. I have read many of your posts where you have said that the benadryl made you sleep at least much of the treatment. I either slept just a little the first time or was so comfortable and calm I may as well have been asleep for a little while, but the second time, the benadryl had the opposite effect on me (at least the hurse said it was the benadryl). I got restless legs and kept having to move them, but it was not even just my legs. I just felt like I needed to move all over, arms, changing positions in bed, everything. So the 3rd time, they decided to cut the benadryl in half. So far as I could tell, everything went fine, no sleeping, no restlelss legs, nothing noticeable. But...after that treatment, several of my side effects are stronger than before. Like I immediately had the nerupathy in all fingers and thumbs and it has really limited what I can do, the metal taste started right away and was so strong, many foods have made me wince with the taste. My eyes are constantly running, my cough is persistent, and my face, neck, and hands look like they are severely sunburned. I had all of those things to a much less degree before. I am even wondering if that was why my blood pressure kept dropping and my heart was racing this time, making me pass out more than the other times. It makes sense to me that these effects may have been less if I had, had the usual amount of benadryl. Has anyone else had their benadryl lowered or stopped after one or more treatments and noticed an increase or intensity of their side effects. I plan on asking the onco doctor to give me back my benadryl if she can see any possible connection. I may be uncomfortable for a few hours during the infusion, but I would much more tolerate that than the level of these side effects.
On a side note, this has to do with the severe sunburn part. I am just not looking very attractive at all these days. I do not like my bald head, but my wig is so uncomfortable, that it is the first thing that comes off when I get home. So I either have a pink sleeping scarf on my head, and my face looks harsh and painful. So does my neck and my hands. Actually, they do hurt. I kept putting extra moisturizer on them, and lately I have been using some aloe vera. Anyone have any other ideas what I could use? I know the end is in sight, but I am tired of waiting. I noticed that some of you have finished your chemo treatments or switched now from one kind to another kind. I was wondering if anyone has experienced this yet, if you could tell me when my skin will return to "normal". And did I mention my fat face?
0 -
Doxie -- am getting Neulasta. Onco and primary both see the reaction as being to taxotere. I think mostly because the heart issues are stated possible affects of taxotere. Went back to primary Sat. to check heart. Not resolved. Changed heart med dosage and added blood thinner. Not really happy about that but am told that all this should resolve when drug out of system. Apparently onco told primary we are on for final treatment on Thurs with alternative to taxotere. Will feel better after I talk to onco myself hopefully tomorrow.0
-
CHH - Having confirmed heart symptoms with the hives would be frightening to me also. It's notoriously difficult to tease out the causes of either. The hives could also be causing the heart symptoms.
I am a terrible patient because I won't go in to the doctor if I think I can handle it on my own. I called in my symptoms and got the steriods I needed. I didn't see a dr, so can't help on the heart symptoms when at the worst. My MO was in a different clinic on my worst days, so I wouldn't have seen him. They would have sent me to the ER for a hospital admit, which I didn't want to add on top of everything else. Without getting the steriods in a few hours, I would have gone to the ER myself, though. I had chest pains I didn't report (scary, but my family history has no heart problems) because I thought it was acid reflux after Tums helped. Now I realize that may have been from my lungs because of the intensity of reaction. Have had continued congestion along with the hives. Heart and lungs checked out fine before my last chemo infusion.
I hope your doctors are correct in targeting the taxotere. Just be watchful hours after the Neulasta shot and in the days to follow. I'm still afraid of another hives bloom because of a reaction to taxotere also, but so far so good. Make sure you know what your drs want you to do with a more severe reaction. Good luck and I'll be thinking about you on Thursday.
0 -
Hi All,
I just had my first horrible experience with the big D. The cramps were so painful. Anybody have any tips on how to stop the cramps? On call onco. dr. said I could take imodiam - I did. It was 5-6 hours before the pain slowed down. I'm better now, resting and trying not to move so much.
Bahamamom3: Sorry about the reactions you are having The benedryl just put me to sleep. If my mom is with me, I struggle to stay awake with her -but I never succeed, I just pass out.
Back to resting - thanks, Juanita
0 -
Juanita, so sorry about the big D! No fun at all. I haven't had that, just the opposite side - the C. Still painful stomach cramps and feeling horrible. Surely one day this will be a distant memory.
RE: Benadryl -- My sister always goes with me to chemo but does errands and other things while I nap through the Benadryl. I hate to sleep while she's with me and she hates to keep me awake so that's our compromise.
I am having trouble answering the right people on these threads. My brain gets frustrated trying to find the one that I want to comment on. That makes it sound like normally I'm very sharp. hahaha! Not so much, but right now I have the patience of a gnat.
Phyllis
0 -
The Big D has been my biggest challenge with every treatment (three so far). I usually get it on Day 4 and it lasts for almost ten days! I also take Immodium, but I'm being a little more proactive with it than I was in the beginning.
As soon as the diarrhea starts, I take two Immodium. I also take another one before a meal if it's at least four hours later. It doesn't stop the diarrhea completely, but it keeps it somewhat under control.
I also drink lots of Gatorade due to the loss of electrolytes and potassium from the diarrhea. Like I said, I can't stop it completely with the Immodium, but I have learned to control it better.
Tomorrow I'm going for my 4th out of six TCH treatment. It has certainly been a tough road, but I'm getting there, one treatment at a time. Each treatment gets me closer to the finish line that will hopefully happen around mid-March. Of course, I'll have to continue the Herceptin until November, but that one is a piece of cake compared to the TCH treatments.
The great advice on this board has really helped me so much so far! Thanks!!!
0 -
Hi All,
I have aport as welland never seemto be able to time the numbing cream correctly . Traffic,no traffic things move more quickly than I expected UGH. I also get the spray,but have always exceptonce been ableto feel the prick going in and when it comes out. Close my eyes, grit my teeth and white knuckle the chair. There has gotto be abetter way. But my veins are small and this is much better than the few times without the port. Bruised hands etc. And the nurses were getting anxious cuz of my veins. I can barely handle myself, I don't want to worry about the nurses feeling bad.
phgraham,I am with you with my ability to focus,the attention span of a gnat or the ability to take info in and retain it ,barely. Began to hang sticky notes on my kitchen cabinets last night. Martha Stewart would freak
Gentle afternoon
Nel
0 -
Stupid Port Update - Once again the nurses could not get a blood return from my port. I had to have my first port removed and replaced for the same thing. This is my second power port. Two weeks ago, they had trouble with a blood return but it finally worked. Last week they had trouble at first, only pink instead of red blood return but it finally worked. This week nothing. Grrrrrr. Had to go have another port scan which showed everything is normal.
We went ahead with the chemo this week because the radiologist confirmed that everything is going to the right place. Next week though, if no blood return we will have to use The Drano Technique (that's what my BIL calls it) where they use the cath flush, etc. If that doesn't work I want my money back!
Radiologist thinks it might be some fibrin sheath forming and that the cath flush will clear it. I hope he's right, or I will ask for my money back from him too!
OH.....maybe I should have posted this under "What cheezed me off today"?
Phyllis
0 -
phgraham, i had the same problems with my port. three weeks ago, they did a cath flow and it worked great yesterday. it really irritates me that they can't get blood from something that cost us a bunch of money and some pain. i certainly hope you have success with the cath flow next time. it's such a pain in the butt. good luck to you.0
-
YaYa, When I think that I paid the manufacturer twice, the surgeon twice and the RO twice to check it, I'm really irritated also. I even asked the surgeon when he did the "revision" if I was still under warranty.
Okay, done now. Thanks for listening!
Nel, Sticky notes is a great idea! Now I just have to remember what I need to remember.
Phyllis
0 -
phgraham,
I had one week where there was trouble with my port. Frustrating for everyone and I was so glad it finally worked that week. ONe of my concerns - port replacement,once was enough
And for the sticky notes, I did stare at one for sometime last night trying to remember what I was trying to remember. Cameto me this AMand luckily it is an endof the week issue LOL
Nel
0 -
So, my chemobrain won't let me keep everything straight with names, but I want to comment on a few things. THANK YOU for all your wisdom about the cream. I will be trying it next Tuesday AND my plastic surgeon said I could use it for my fills. My left side is not numb at all from lymph node removal, so that side is always uncomfortable no matter how careful he is. I'm glad I'm doing reconstruction, but really don't like the fills. Needles don't really bother me much, but these do! It will be worth it, I'm sure.
The port is so worth it, but that bigger needle killed last time. The cream is supposed to work for awhile, so I'm putting it on just before I leave. I have a 45 minute drive...I will let you know how it works!
The big 'D' hits me too, but it is more just loose bowels, not cramping too much. It bothers my hemorrhoids the most. I would personally rather deal with that than constipation. One of the nurses suggested the BRAT diet and that seems to help a little. I just didn't want to take one more med for it!
Here's to a better day for all of us tomorrow. Bahamamom, what chemo seemed to give you this reaction? I haven't had anything like that, but haven't started Taxol yet. I've been on A/C. Taxol next after one more A/C. I am so sorry it has been so difficult for you! Would love to know when you get relief and answers.
0 -
January 18, 2012
Good Morning,
Yesterday made my 5th round of chemo. One more to go. I asked my oncologist why 6 was the "majic number" and she went into a very detailed account of studies that are being done now that may change it to 4 but 6 has been the standard for my type of breast cancer. She said if I wanted to skip #6 she would be fine with that. I told her I have come this far I might as well get the last one. My blood work was all fine and I am apparently handling it well physcially so I will go the distance. The good news is that my 6 month followup mammogram on Monday was "clear." I don't need to tell any of you how that felt. Still......I am reluctant to really rejoice in all this good news. I guess that is what cancer does to you. Makes you realize it will always be a part of your life from now on. However, I am feeling better than I did Sunday, when all these tests were in front of me. My breast surgeon, who I met with to go over my mammogram and have a physcial breast exam, said I am nearly through the hard part and that radiation will be a "piece of cake." Maybe physically. Time will tell on that but emotionally it might be harder as we have to move out of our "nest" for that and we know we will be terribly homesick and bored. As I am sure all of you have been told, once the intitial setup, tatoos, and the area to be radiated is all computerized, going in each day will be only take about 15 minutes. What do we do with the rest of our time not living in our own place?? But.....that is small potatoes and that too shall pass.
I am so sorry to read of the problems some of you are having with ports, etc. I alway worry that they will not be able to get into my veins but have lucked out that way too. Today I will get my neulasta shot and then the side effects will begin. They still are very non-committal about what might cause my fever after each treatment and will not say for sure that the neulasta shot is doing it. But.....I stressed to them this is the routine pattern for me. They say as long as it does subside, don't worry about it as my blood work is very good and does not indicate infection of any kind.
I also mentioned to her that my weight is up and I don't like that aspect of it but she told me the steriods and less activity is doing that once chemo is over with, then I should lose some of it but I will need to increase activity level obviously. One thing at a time and once again, that is really small potatoes right now but I don't want to gain any more for sure.
I am hoping that all of you get past your side effects and just remember each day, we are all getting closer to the end of it. Positive energy going to all of you.
Allagashmaggie
0 -
Allagashmaggie--my DH and I will also be moving temporarily away from home to get rad tx. Not looking forward to it, but we can go home on weekends, and we live in the No. part of the state where it's snowy and cold so going south for rad tx in Mar/Apr where it will be warm sounds good.
My radiologist said rads aren't so hard either. And about 15" after the intial tests to determine how to zero in on our "problem" areas. I'm afraid of LE since my collarbone nodes have to be radiated...I had several positive nodes so this area requires radiation. He said my risk was slight--5-8%-but still.
I figure we'll explore the desert and do some hiking, museums, etc. Have to find an extended stay place that takes a medium sized dog.
Congrats on getting near end of chemo! I'll be 1/3 way through taxol after today. 8 more to go after this....
0 -
Hi Claireinaz,
Sounds like you may live in the Southwest. Hiking in the desert and going to museums sounds good to me. I wish we could travel to the desert and go home on weekends. We live in the Northeast so we will go from snow to maybe less snow but still winter. We have taken several trips in April out to the southwest to hike and tour the National Parks out there. That is on our agenda again when things calm down.
It has been so long now since I met with the radiologist that I will have to refresh my memory on some of this. I originally met with him before I knew for sure I would be doing chemo, which comes first. I, too, am concerned about heart, lungs, etc., being radiated as it will be my left side getting it. I remember he assured me they take great measures to avoid those areas and I am sure they know what they are doing but.......even the word radiation is troubling.
We are fortunate that we have a place to stay that one of our guests here at our lodge owns. It is out in the country and we can take our 52 lb. springer spaniel with us and have a good place to walk her every day.
Good luck with the 8 more. I know that may seem like a long way away now (is it every 3 weeks), but I found myself sitting in the chair yesterday amazed really at how fast this has gone by. After my first treatment when I was feeling down and out and depressed, I thought, this is going to be a long haul and now I have just one more to go.
Thanks for the reply,
Allagashmaggie
0 -
ToClaireinAZ: The cancer society helps people with housing at times for just such things as radiation in another town. When I was in grad school, I got lymphoma and had to get chemo and rads in Tucson but I live north in Tempe. That was fine for the chemo but the rads were different as you know. Evidently, apartment complexes here and there offer apartments for free to ACS for short stays. Maybe ask the social worker at Banner hospital (right? MDAnderson) -- they would be the ones who make these types of arrangements. Q0
