Starting Chemo September 2015; join us!
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luz, that must be so frustrating. Just when you think you're in the home stretch. I hope the antibiotics keep you safe and you finish on time.
Also, it's totally okay to have a breakdown after chemo. Just because you're done doesn't mean this awesome experience doesn't linger on both mentally and physically. Be kind and give yourself time to heal. Even though I have some peace about my situation, I cry often. Sometimes in pain, sometimes just for emotional release.
Awesome, my scalp is sweating profusely again.;)
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I have L-glut powder ready to go if I start feeling neuropathy. Some people like it in juices and some in protein shakes. You could mix it in fruit yogurt or smoothie too. I haven't tried anything yet but that's just what I've read others do.
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Cajun so hate you are having such pain! I too have found taxol to have a worse cumulative effect. My neck pain never goes away.
Lindy C thanks for your comment back about acupuncture and others who commented. I may try this treatment after I finish chemo.
Exercise sometimes those big girl panties just won't pull up! Thank goodness for every new day to continue the hike out again. Love that analogy.
I am thankful my MO gave me a week break on Taxol. The neuropathy is a little better in my hands but feet still numb. and I didn't need a nap yesterday! First time in months. Hopefully by next Mon the numbness will clear up more so I can complete the Taxol, or maybe I don't really want to? Another of my toenails is lifting, yuck! My fingernails are so sensitive but no lifting.
LOVE the comments about eyelashes, eyebrows and duck fuzz hair! I am so eager to report I have seen new growth too.
Healing karma, hugs and love to all
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Artista, I have been taking the horse pill size L Glutomine which sometimes I can't choke down. I am going to look for the p0wdered version right now!! thank you for mentioning
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Cajun
they wanted to do it post Chemo 4 weeks but I held out for 6. Yes it is because of the PALB2 GENE and to go on Arimidex instead of Tamoxifen.
Twiggy I mix L-Glutamine in protein drinks or Nestle Quick some people say that it taste fine in juice or lemonaid but I couldn't make that happen.
As far as recovering and getting some mojo back from TCH I was pretty tired for quite a few weeks My husband did most of Christmas but for then I felt pretty good week 5 just in time to go into surgery. I tend to get a runny nose and eyes when I have Herceptin by itself. I have had two doses since Chemo. I am hoping I don't have that every time.
My gut sure hasn't recovered but it is hard for me to wrap my head around being 7 weeks PFC and having gone through all I am going through. I bit the bear thats for sure.
Scotland my husband and I love to backpack and I too share that feeling of going around every bend sure that is the last one to get up to the trailhead. I dream of everything I can eat and everything we will do when we get there. I will have to stock a cooler for the kids this summer that is a fantastic way to get them to hike out.
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Cajun: why on earth didn't your MO give you adequate pain meds???? Hoping you're feeling much better by the time you read this (((((hugs)))))
Exercise: so much better to cry it all out than keep everything bundled inside. Big girl panties are so over-rated. I hope you feel better soon (((((hugs)))))
Luzeelu: I hope yoir fever has come down by the time you read this. Fever is my greatest fear at this point, with my bloods at their bottom now. ((((hugs))))
Minnesota: I hooe your neuropathy eases soon; hopefully the reduced chemo dose helps. ((((hugs))))
So many people (including husband) JUST DON'T GET IT that the day of your last chemo dose doesn't mean life starts to get easy immediately --- we still have to suffer through the side effects and the low white cell phase, then need time to regain our energy and recover psychologically. And so many of you still have operations and radiation therapy ahead (((hugs))). I wish people would give us a break!!!! But then I'm not sure I would have understood exactly what kind of h*ll this journey entails myself, if I were not experiencing it now in all its "glory"...
I'm just now recovering from what I hope is just another allergic reaction to the FEC/nausea meds combo (breathing problems, dizziness, heart racing); my nails are flaking and crumbling to the quick; neuropathy certainly hasn't gone away; now chronic skin rash still here; and gums are sore, most everything still tastes like cardboard; infusion site arm veins are still inflamed; insomnia; exhaustion from the tiniest efforts; and did I mention the awful brain fog? Yup, real time to celebrate ten days PFC...
Sending out (((((hugs))))) and healing energy and well-wishes to everybody I didn't mention above. I just can't type anymore, my fingertips are so sore (neuropathy).
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Cajun - Please call your doctor's office if your pain has not lessened and get something for it. We're pulling for you.
Lila - Thanks for sharing your Taxol experiences. They make me feel less crazy.
Tessu - I'm very grateful for your post-chemo perspectives. I'm going to remember them come February.....
I'm really struggling going into the last four weeks of Taxol. Neuropathy was better yesterday after lower dose on Tuesday, but is getting worse again this morning. Agree that the cumulative effects of Taxol are nasty.
Caught a glimpse of myself in the mirror last night and was hit hard. Came into the living room crying and blubbered "I look like sh*t."
Husband calmly said "You look like someone who been through hell - and is coming through it with great bravery." He went on, but I didn't register the words because I was crying so hard.
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Luzelu, I have a special night sleeve. http://solarismed.com/introducing-the-tribute it's much more comfortable than the bandages, and it's easy to put on and take off. I hated the bandaging. It's so much work, and so uncomfortable. and really hope rads don't make my arm swell so much that I can't use the sleeves. Right now, I have no swelling. I'm supposed to keep my arm in compression until a few months after rads, then can gradually lessen the time I'm in compression if all goes well.Minnesota, I look like Hell. No hair, 3 eyelashes, eyebrows mostly gone, bags under my eyes, runny eyes, drippy nose, port sticking out of my shoulder, one breast gone with a huge scar going from my sternum to the back of my armpit and a few pounds of chemo weight. A year ago, any one of these things would have freaked me out; now, I have all of them at once. And that's just what you can see. But I have fuzz on my head, and the port's coming out in a couple of weeks. Recovery has begun, and I'm excited.
Tessu, I'm also 10 days PFC, and the Taxol is lingering longer than I'd hoped. Neuropathy and fatigue have hung around longer with each round, and the nail weirdness continues. It could take months to be free of the side effects. At least the SEs are no longer getting worse.
Cajun, I hope you're doing better this morning
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I'm right there with you ladies. Eleven days PFC, I look like hell, feel like hell, and am emotionally, mentally, and physically exhausted. Every night when I go to bed I think tomorrow is finally going to be the day I start feeling better.....I'm still waiting for tomorrow.
I've really taken to Exercise's analogy of "just keep hiking" lately. The car is just around the corner.
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Good Morning Ladies,
Hope everyone is having a better day! Thank you all for your posts, so glad I found this forum when I did. It really helps a lot!!!
And here's my RANT for the day:
Went back yesterday # 6 Taxol, Blood had gone way down again. Not enough to stop me from getting treatment but doctor concerned because it went down so much in one week. Every time I take Taxol white blood goes down at least 1.5 to 2 points. Week of xmas it my white blood count was 2 and my ANR was 1.2, MO advised skipping treatment, went back week of NEW YEARS white count was 5.9 and ANR was 5.6, (which was great) took treatment went back yesterday white count was 3.6 and ANR was 3.2 (still ok but it drops so much every time I take taxol) So MO Reduce Taxol by 25%!!!!! This scares the H@#$$ out of me. I asked MO about his decision: said it was better to reduce dose than to miss doses, and that he was pretty sure by next week w/o reducing the dose my blood count was going to be too low to take treatment. Not sure why I am having such a problem with my blood on taxol.
AC symptom were so much worse for me!!! I guess the nuelasta saved my white blood count? I felt sick the entire 8 weeks, I lost 25lbs. mouth was so sore and stayed sick to my stomach all the time. Didn't want to get out of bed. I did b/c I had to work, but I was so dang tired all the time.
I've got taste buds back, hair starting to grow( a little, no eyelashes though)very little Neuropathy. I've actually gain 3lbs back (which I need to loose 25 more!!!) lol I am really tired all the time. But I figured it was because I work everyday except chemo day and have been doing my normal house work and cooking (now that I don't get sick every time I smell food cooking!!) I stay blah and have not energy at all. I just don't understand why Taxol is doing this, I feel like at stage III I need every ounce of poison to kill it....sorry I am rambling!!!!!!
Cajun- So sorry you are in so much pain, not sure how you do it with 3 little ones. I am so hoping you are feeling better!!!
El Tigre- How long b4 you see radiologist?? My doctor told me yesterday 4-6 weeks after chemo I will start radiation.
Minesota- Are you on weekly Taxol? Hows your blood counts doing? What number are you on? They reduce dose b/c of neuropathy?
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Hi everybody,
I hope you're all feeling decently well today.
Like many of you I too am really struggling this week. I'm 7 days PFC and I feel like I'm trying to claw my way back to life.
I can't even describe the amount of fatigue I had this time. Just walking to the kitchen in my house I'd have to sit down and rest. It's so demoralizing. I had an emotional breakdown last night. I just want my life back. I feel like I'm not able to really spend time with my 3 yo, I want to get back to work and feel apart of that again (I was out all this week but attempting to do some work from home to keep things going) and see friends again. I feel like I've been in a coma for a week and tethered to my house. I have cabin fever and a lot of frustration about how much this is holding me back.
About half of my fingernails are black and falling off. My taste buds are just disgusting. I'm really struggling to eat and I feel weak.
My BS has scheduled me for surgery on 1/28 but I'm thinking about asking them to push back the date by a week or two. I'd really love to have some time to feel better before having to recover from something yet again. Have any of you asked to change your surgery date?
My surgery plan isn't even ironed out yet. I had a call with the PS earlier this week and talked to him about his recommended plan - which the BS signed off on. He wants to do nipple sparing mastectomies for me (as long as the pathology will allow it), but I'm not sure if I should do that (is that leaving more risk of recurrence?).
He also wants to break the procedures up and have the first surgery be my axillary node dissection combined with a bilateral breast reduction that would then send a lot of tissue to pathology to look at and see if nipple sparing is possible (along with looking at the tissue to see if they can find any evidence of my missing primary tumor site). He says the recovery from this first surgery would only be about a week.
The second surgery would then be bilateral mastectomy and put the implants in (if possible based on my blood circulation in the skin at the time). That would take place in April and would be about a 5-6 week recovery.
The question that remains up in the air is what kind of radiation do I have to have and when? The PS thought I only needed to have radiation to my axila since that's where the cancer was found (nothing was found in the breast). I recall the MO saying that I'd need to radiate the breast as well since we know that something was there at one time but disappeared. The PA in the MO's office mentioned being concerned that I would then be waiting until the Fall to have radiation (after all the surgeries are done and recovered from). The PS said he would bring all of this up for me at the tumor board meeting on Tuesday and get back to me to discuss the plan again.
Needless to say, this is all very stressful on top of feeling really terrible. But despite me not being here posting much, I'm thinking of you all and what you're going through every day. HUGS!
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Tkemp - Finished weekly Taxol #8 of 12 this past Tuesday. My WBC bottomed out at 3.0 for a couple of weeks, but they did not reduce dose or skip a week. This past Tuesday's WBC was 3.9 and ANC was 2.9. Only thing I did differently after counts cratered was up my protein intake (because protein count was low, not because I thought it would boost WBC/ANC). ¯\_(ツ)_/¯
But even with improved WBC / ANC, dose was reduced (1st time reduction) by 15% this week because neuropathy got worse over past two weeks. Ugh.... Hoping I can gut out the next four treatments.
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Cajun, my heart is breaking for the pain that you're in. I wish I could do something to help, but I am definitely lifting you in prayer right now, my friend. And I agree with the others that it's time to inform your MO that it's this bad.
I'm also surprised, like so many of you, how rough Taxol can be. I'd been given the definite impression that after AC, this was no biggie. NOT. I think that's easily said by nurses/doctors who haven't had it themselves. Yes, compared to AC, it is not as brutal, but it is its own bag of crap. The pain and fatigue are real and, according to the chemo nurses and PA, quite cumulative. I appreciate those of you who are sharing your PFC experiences so we have a realistic idea of what to expect. I have a feeling those close to me (well, myself included) would have a mindset of "Yay! You're done chemo! Moving on and feeling normal, right?"
I'm sitting here trying to read through the 2015 and next the 2014 DIEP threads to decide if this is how I want to go. Talk about major decisions... who would have thought this time last year that we'd be here?
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tkemp, I met with mine during chemo. I go in on the 13 th of January for my sim and start on the 27 tentively. Rads doc usually does 4-6 weeks after chemo but every facility is different. We wanted to get to rads sooner rather than later because we waited on the chemo because of our fertility procedure.
AC for me was easier than taxol. I had a few mind fog days but other than that nothing much. The biggest nuisance was nuelasta.
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Before I forget for those ladies doing Glutamine: cottage Cheese is packed full of Glutamine.
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My mom is staying for atleast three weeks to get me through my next herceptin, Arimidex and until I can do laundry, drive and herd kids. I am taking this time to just recuperate from Chemo and hopefully get my body to cooperate.
this is My Boobie Post:
I think there is so much fear wrapped into this journey and we each have choices based on where we live and our time line trying to save our bodies from cancer and somehow live with our self image on the other side. So much to consider and difficult decisions. I can share my experience and I would appreciate if anyone else wants to share what happened with theirs.
My situation I think was tough I only had one BS and two PS to choose from who could do immediate reconstruction. One very experienced and conservative one and one that was fresh out of college and didn't do nipple reconstruction the way I wanted. my Breast were either a DD or DDD so my surgeon did take out extra skin and reduced me to a D. The only thing is that the pits they took out from under my arm for lymph nodes was HUGE. he did everything he could to close the space but on one side I have a small tuck. This was probably because my sentinal nodes were in the far back of my arm pit on both sides. The small tuck he put in may be the only reason my lympedema corrected. The drains and filling that interstitial space. Atleast that is what I am going to tell myself.
When they did the swap my shape is quite good and the nipples have good symmetry but my body didn't totally assimilate some of the alloderm. They look nice and round but I don't know whats going to happen down the road. The minus of not doing the Flap is I still have a pouchy belly I would have liked to have gotten rid of. My husband says to just be patient and kind to myself and give it time.
For those of you who have to consider the oophrectomy or hysterectomy. so far its been the least of my bothers. They took the skin out of my abdomen for the nipples and its a little tight but so far so good. Worse hot flashes that's for sure and I am worried about using my lady areas for recreational purposes but I am weeks away from that. I did read THIS PDF before I decided to go ahead and trust my surgeon and remove everything. I have two aunts that had gynecological cancers but no one can tell me what kind so I really didn't want to face cancer of anything in my lady bits again. I had the procedure done by a very very good Gyno Mo and so now just a week after I can tighten my core and everything seems to not be jostled around too much. He would have done it orthoscopically or robotically but I was doing stuff upstairs and downstairs and needed skin for nipples and a hospital stay. It all worked out. It just looks like I had a C-section now. The scar is very thin I can live with it I guess. I wish there were some studies that would allow even the tiniest bit of estrogen but unfortunately its not going to happen. I am taking Vitamin D and Calcium and looking into what else I can do along with weight bearing exercises.
AI inhibitors seem to be mostly concern me for Cholesterol, bone Density, heart health and all the things that being in menopause can cause problems with.
-----------------------------------------------------------------------------------------------------------------------------------------------------edwsmom I know what you mean about the fatigue. I was shocked at how severe it was. Hang in there. Try to save your energy for the most important things and don't blow it on other things that can wait. your description was spot on. It kind of lifts even after having a double surgery I am not as fatigued as I was for the month after Chemo.
About your surgery wowza its like you are being offered the moon and the stars I am so jealous. this sounds like the angelina jolie procedure where they let your nipple form new blood flow to save it. I was a DD and they told me no way even with reduction could I save my nipple. But I do live in the boondogs. I would want to see lots of pictures and ask your PS for references. I understand about being concerned about both the nipple sparing and the radiology but I don't have advice with it.
Carolina Amy. I signed up for the breast pictures forum here on the site and am waiting for approval. Maybe that would be a helpful move to better understand the DIEP flap. I think they have very much improved the procedure to not damage the muscles in your abdomen. I would be very wary of losing my my core muscles or my trapezius for a boobie but it sounds like the new procedures are much safer. Again I would want to have references and pictures from the surgeon.
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hi ladies!!! I'm so thankful that everyone is so honest here. I'm going to pray tonight for relief of the physical and mental anguish that this disease brings us all.
Twiggy,
I down the l glut mixed with water... fast, just once a day. I have no clue if it's done a thing, but it was 25 bucks for peace of mind.
Exercise, I take a high dose of vit D. I'm targeting a range in the 70s. The kids take it too. Even though I live in FL, I have to wear sunscreen all the time due to the heightened risk of melanoma (love you too, BRCA2!)Saw Dr today and he said, "It's highly unlikely this is bone mets." What?!? Was that even on the table? Wanted to know why I hadn't called... I said I thought it was just a SE and I was scared he would want to reduce the dosage (no). Left with a rx for morphine and double down on the flexeril. If it still hurts next week, off for a bone scan. He reiterated he feels confident that I'm okay, since there is a "70-80% chance of total remission." Hmmmmmmm. Are those good or bad odds? Lol. Anyway, last chemo scheduled for 1/18 at 8 am for 9 hours. He offered neupogen as needed over neulasta,but I declined. I need the big guns. Giddyup!
ETA: rads starting early Feb., looks like ooph will be scheduled for late March with a Tamoxifen bridge into the clinical trial in April. And back on Lexapro for crazy night sweats.
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exercise, are you having a DEXA scan soon? I forgot to drink my almond milk today, grrrrr. Damn you, chemo brain!
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Uh oh... Woke up to tingling in my fingertips. Taxol!!!!!!! Hurry up, Jan 18!!!
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I'm laying in bed and just caught up on the entries. Blessings to all. Everyone's experience is so different but so helpful to read about.
Cajun- so glad you got some meds for pain relief. You are one tough cookie. I have a dexascan soon. Should I be drinking almond milk? I am unfamiliar with this scan and what it will mean for me. I better read up on it. This month I will have my first pet scan and an MRI, too.
I'm afraid of scans.
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Quick question:
When your taste buds are blown what are you guys eating?
I'm still really struggling with food and not eating very much. I just can't get many things down.
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I'm eating mashed potatoes with a little butter in them, Trader Joe's chicken nuggets, pasta, apple cinamon oatmeal, nacho chips, pancakes. Basically since I get queasy stomach for a few days after I find things that stick do better to make me feel better. I also found, not to do with taste, that especially since I'm on abx daily prophylactically to take a probiotic. It seems to help calm the stomach some too.
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Yep, mashed potatoes got me through chemo. and ice cream, and chips and salsa. Unfortunately for my waist line, but I'd say nutrition comes before calories!
Octogirl
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Has anyone else been confused and disoriented during chemo? I had to call my husband to come pick me up from church, I was just lost. I couldn't remember his number. I was so scared. Everything is agitating to me. Things are too loud and bright. I feel like I'm losing my marbles.
ETA: Not the chemo! Moderate case of serotonin syndrome, where 2 antidepressants interacted. Now off all meds but one. Just going to deal with the pain and night sweats. That was horrific.
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Cajun I have had some real crazy experience like that. I will.post about them. Hang on girl you are almost done
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cajun, yes, I've experienced horrible brainfog and confusion the first week after each dose of both Taxotere/ Herceptin and FEC
Although I am now 12 days PFC, I am still struggling with short term memory and concentration issues, like ADD amped up by at least ten times Hoping this will clear over time; if it doesn't, I'll have to find a different line of work or just retire. I'm not sure whether this is a result of age (59). I am also experiencing severe sleep problems --- can only sleep 3-4 hrs at a time, even with melatonin or sleeping pills. Currently taking melatonin at bedtime if I can't fall asleep (most nights) then alternating through the three sleep aids in the cabinet, but then taking a night off (usually sleepless) to wash the chemicals out of my system. If this doesn't clear by spring, I think I'll just have to bite the bullet and get tested at the (extremely expensive) private sleep clinic in town. I don't even want to think about how AIs are going to affect my sleep. At least I know it's not sleep apnea (got tested a few years ago when husband was upset by my snoring.
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Cajun - You are not alone. During one of my Taxol infusions, I was very confused. I tried making conversation with my husband to see if I could speak and make sense. He could tell it was a tremendous effort just to put one word after the other. I felt like my brain was full of sludge.
Like Tessu, if I get more than three hours at a time, it's a major win. Usually, I sleep perhaps 1-2 hours at a go at most. I have to take an OTC sleep aid to get any sleep night after infusion and the next night. Also like our Finnish friend, I'm dreading being on AIs long term. I expect that's going to be very challenging.
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oh man, ladies! I'm so sorry you all are going through that too. Thanks for sharing. I feel like a circus freak with all the SEs. I'm nervous about 10+ years of AIs too (doctor said maybe for life). I hope we will come back here to keep sharing our stories. Love you all! Xo
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I have had terrible bouts of short term memory confusion. Very troubling. One time I forgot who was picking up my son only to arrive to the school and become convinced that he had been kidnapped. It took 45 minutes to figure out where he was that day. It was a nightmare.
I also go in the car yesterday to go to the store. I knew I was forgetting something and finally gave up trying to remember. Halfway there I realized it was my wallett and had to turn around.
I write everything down for doctors appts and record them on my phone. I truly have no memory.
When i forget where things are I say " Damn that Betty" this is the name I have given Chemo brain ( no offence to betty's out there)
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Apparently my MO decided I was well enough to have my final infusion, so here I am, almost done with all this crap. My fever has been basically normal for the past couple of days. Still feel kinda like crap, but I can just spend the rest of the week on the couch. Rescheduled tomorrow's appt with the physical therapist since I haven't managed to deal with much of what she told me last week anyway. I'll just wait and see her next week instead.
Scotland, thanks for the tip about the night sleeve. I'll inquire about that next week. Supposedly I only need to wear the regular sleeve during the day and nothing at night but she suggested I keep wearing the bandage at night only another week anyway. I've just been wearing it this past week because I've been too sick to deal with the massages. Somehow I doubt I'm going to have the patience the deal with them every day anyway.
30 minutes to go! I guess I'll ring the bell although it seems a bit silly. Now if I can figure out how to keep my thumbnails from falling off, I'll be in great shape.
No word so far on future scheduling for rads & such. I assume they will let me know something...
https://www.youtube.com/watch?v=pafY6sZt0FEWhat a long strange trip it's been!
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I just can't type properly anymore. Damn chemo brain.
Thanks to everyone for being here and being such a valuable support system.
Keep on truckin'
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