Chemo Starting September 2018
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Thank you everyone! It's great to know so many who have gone through AC before me. At 1 month post-surgery, my blood test shows that my white blood cell count is ok, but neutrophil levels are low, so I'm of course worried about infection. I started checking out UV toothbrush sterilizers and considered bleaching my shower curtains too.
Sheri - How did your radiation and appt go?
Beeline - Hope you can continue with your Taxols, and for the neuropathy to improve. I was organizing the house for hours last week and then started feeling pain in my fingers again so I stopped. We have to go easy on what we can/cannot do...
At 10 weeks post Taxol #12, my eyebrows and eyelashes are back to about 70%, but no new growths for the past week. I wonder if this means they'll shed again. Nevertheless everyone has been saying I look better than before surgery, and I think the eyebrows and eyelashes contributed. I definitely don't think it's vanity to do microblading! It would feel nice to just look normal and healthy.
My hair at the very top was the last to come in but seems to be growing the fastest now. They kind of stick out from the rest and I don't have this nice round shape anymore. My sister said she's bringing something better than Rogaine so I'll see how well it works after my ACs!
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Hi team, hope everyone is hanging in there. So I saw my MO yesterday... he wants me to stop taxol entirely after only 6 doses. He is leaving the decision up to me, but his call would be to stop now, that the benefit I would get from a few more doses is not worth the trade off in loss of function. If I do opt to continue it would be at a lowered dose. As I said to my husband when we got home - I guess there are no easy choices in cancer. It was a really good appointment and I really like and trust him. I realised I am probably a very high maintenance patient because I spend so much time reading research studies and conference proceedings. Luckily for me, my MO likes to show off a bit that he is up on all the latest studies and basing his treatment on that (and he genuinely is). So we discussed it all at length. There are no studies of fewer doses of taxol, but he did say that in the big comparison study of different taxanes and weekly vs. 3 weekly schedules, a large percentage of participants did not complete the full course (I swear he said 75% but that can't be right. Maybe only 75% did finish them all) but as long as patients got "most" of the course they showed the benefit. He thinks hormone therapy will be more important and is very excited about the potential of the trial drug.
I really don't know what to do. I would love to be done with chemo, of course. And I knew going into this appointment that there was no way they would let me finish the full course. My husband and I both had/have 8 in our heads as the magic number, based on nothing at all. But is there any reason to think 2 more infusions at reduced doses is going to make the difference? I'm scared to stop, but I am also sure that if I do another round it will throw me right back to where I am now (or worse) with the neuropathy. I don't know which chance to take. Do I just take a deep breath and trust my MO and move on? Any thoughts or input appreciated. xx
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Beeline, I think that is a tough one. But if you trust MO and he thinks benefit of additional rounds would not overweight the SEs, I would go with his suggestion. Having said that, I am not sure of how much neuropathy effect you are facing. If you think you can manage it for next infusion, one round with low dose can be tried. I haven't researched any studies on this, but based on the fact that I was asked to select between TC vs. ACT, I think there is not one standard treatment or a golden rule proving what really is the best. Somewhere we have to just trust that the choices we made are the ones that are best suited for us. If you have any gut feeling, go with it.
I know this is not much help, but praying that you will have the answer soon. Hugs and good vibes....
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beeline - That’s a tough one... I have heard of people whose tumors shrank from AC but not Taxol, and others Taxol not AC. So it does make one wonder whether all the chemo is necessary. I did notice my primary tumor already became impalpable after 4 Taxols. After 12 Taxols (with reduced #11 & 12) what was left was 6mm and 1mm. Given that tumors are usually not palpable until 1cm (per my MO), my 3cm tumor already broke up to pieces less than 1cm after 4 Taxols. Would the results be the same without the last 6? I dont know...
I do remember reading that if the dosage is reduced to about 100 mg/m2, neuropathy does not get worse. In my case my neuropathy stayed the same during the last 2 infusions. So if you want more peace of mind, getting #7 & 8 with reduced dosage may be worth it.
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Thank you both. I am still not sure what to do, but have put in a call to the nurse to get her input. You are both right thinking that there is not one golden rule for treatment and no one really knows how much chemo is needed. Equally, no one seems to know much about neuropathy and how it progresses. It could stay the same if I do more treatments or even get worse if I quit now. It probably comes down to what can I live with? If I have a recurrence, will I regret not having pushed on? I don't know. Both my husband and my MO seem to assume I would ignore the medical advice and insist on more. I guess I am that stubborn! But I am quite afraid reading stories of people with permanent neuropathy who are in constant pain and can't walk for long periods, etc. No easy answers. Hugs to you both and thank you again.
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Hello lovelies! Well I'm a little bit excited and have to share! I had my last Taxol last Tuesday, and it was rather an anticlimax. As we are warned, the Taxol SEs, esp neuropathy, have actually increased a bit. Yesterday was full of appointments, medical and radiation oncologists, and the radiation centre's accounting staff with whom we actually had to NEGOTIATE A PRICE! Not the way it should work! But today I had my port out. I drove myself to and from the hospital (our little secret, OK). It's gone! And I feel so free! I still have mini white fluff hair, I'm starting rads in less than 3 weeks, and I don't even care.
Here's to a carefree moment!
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beeline - That’s an agonizing decision to have to make. It really does seem to be figuring out which of two bad choices would be better for you personally. I have no advice, but sending hugs!
Sue - I’m right behind you - getting my port out next week. Can’t wait
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Hi All-
Today is 1week PFC. I’m feeling pretty much as expected. Still tired. Still have sore fingernails. But I feel like today marks the beginning of things starting to look up-I don’t expect to feel worse, only better, even if that takes a long time.
Met with my PS yesterday. He told me not to lose any weight if I want to do DIEP. 👍🏻😂 No problem! Seriously though, I weigh as much as I did when I delivered my youngest. I need to lose weight-or at the very least slowly start exercising again so my body feels strong and useful instead of sick and tired. Baby steps.
Also met with oncologist yesterday. He referred me to the clinical trial coordinator at UPenn. I will meet with them to discuss my options- he is in agreement with me trying to get into a cdk4/6 trial as the best option in new therapies. The thought of all the trouble with no promise of treatment is depressing though. Beeline we will have to share our experiences.
Beeline-it is not an easy situation to find yourself in. I wish they knew more about dosing or that it was all more cut and dry. I hope you can find peace in whatever you decide.
Sue/wanderweg-I’ve just started thinking about port removal-I was holding my baby niece the other day and she started twiddling it as if it was a nipple. 😂 😢Made me sad and laugh at the same time. But I know I won’t miss it when it’s gone, that’s for sure!
The polar vortex has made its way to the mid-Atlantic. The kids have been home for 3 days now. We are getting a bit stir crazy. I’m jealous of those of you in the Southern Hemisphere, but at least the snow is pretty!
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Good morning....congrats KK and SuefromSidney! So happy for you both to be done with chemo!! I hope that each morning does indeed feel a little better, though recovery is not a straight line. Beeline, I wish I knew what to say. The hardest part of this entire thing is the inability to predict the figure. I too am like you, I don't someday to wish I'd done more, but I think you are fortunate to have an MO that is putting it all out there. You may have mentioned in prior posts, but do you have other oncologists to ask? I found that my SO and RO were also great about sharing their opinions. My SO specially so. She was the one who got my oncotype first and said the chemo and that was helpful, to me.
Beeline and others, one thing to ask about is Zometa, which is given to "us" to help prevent osteoporosis. It came up at my last onco appt and post chemo. I had my first infusion yesterday. Not all of the studies are conclusive, but it seems to be newer for premenopausal women or women on the bubble, to help prevent bone mets, and it known to improve risks from AIs. Side effects are similar to the AIs and it seems like some insurance. I've been googling and find slight benefit to a lot of benefit but also not a lot on young women and women in their 40's. Anyway, as presented to me and from what I found seemed like a no brainer.
https://www.breastcancer.org/research-news/2011121...
It wasn't a lot of fun yesterday to be hooked up to an IV but taking claritin and staying hydrated is something I do anyway. And I haven't noticed anything yet. Just something to think about. I had not noticed it come up much.
Brink, my brother brought me Phyto products from France. My lashes and brows are doing great. I am hopefully I won't lose them again. It's three months out today. Fingers crossed.
Stay warm ya'll. The polar vortex hit Massachusetts last night. It was 0 when we left this morning for the airport. Though it will be short lived unlike the poor folks in the mid west.
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Congrats KK, Sue and wanderweg for finishing chemo and getting ports out!! And thank you everyone for weighing in on my dilemma. I think I have decided to accept my MO's recommendation. I had a long conversation with the nurse yesterday. I really like her as a foil to my young hotshot MO as she is a survivor and has been a community cancer nurse for over 30 years. She felt strongly that if there is a recurrence later it won't be because I only made it halfway through taxol, referred to it as a "maybe 3% benefit," and said that my MO would have changed chemos or suggested another couple of rounds of AC if he'd thought it would make a difference. One thought I find comforting is that stopping now gets me onto endocrine therapy sooner and that's the thing that should really make the difference in my 95% ER+ cancer.
Tigerlily - good luck on your work trip! I hope you can enjoy it and not put too much pressure on yourself. And thank you for the zometa recommendation. I have also read a bit about it and will bring it up with my MO when we talk about next steps.
KK - do you have a timeline for your surgery? I agree with needing to exercise and start to feel strong again. I have done it in bursts and starts but it has been hard to be at all consistent. Keep me posted on what you learn from the clinical trial coordinator. When I asked my MO if he thought cdk4/6 inhibitors would make a difference in early BC, he said, "It's not if, it's how much." I thought that was quite encouraging. If I knew I would get the drug I'd feel much better about stopping chemo early -- and about the 2 hour drive each way!
Sue - I can't believe you had to negotiate a price at the radiation centre! WTF??! Is it not covered under the public system there?
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Beeline - I'm glad you were able to make the decision. Does that mean you'll start radiation earlier? Would that cut into your Japan trip?
Tigerlilly - Are you using Phyto supplements? Or shampoo/conditioner etc.? My sister worked at a pharmaceutical so I'm trusting in her judgment! Looking forward...
SuefromSydney - How on earth would you negotiate a price on radiation?? Uh, do they have bulk discounts?
And good to hear you got your port out! Personally I never really minded my port. Since I've always been a hard stick I honestly wouldn't mind keeping it, except regular doctor's office wouldn't know what to do with it. And having to get it flushed regularly is a hassle. I'll get mine out when I get the DIEP flap. K
Speaking of which... is it just me or does the tissue expander feel like a giant port?
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Beeline, radiation treatment is covered by the public health system. We have private insurance so are covered for hospital treatments (with an annual cap). Apparently radiation is an outpatient treatment and not covered, which we did not know. Although there’s a substantial subsidy from the government, it leaves a big bite for us out of pocket. Nasty surprise! The news was delivered with what felt like a scripted spiel. And not communicated at all until the point where I’d be looking at about 5 weeks delay if I now switched to the public system. It feels really disrespectful and has damaged my trust in the whole setup. Had a major panic moment over it in the middle of the night last night, as you do. I’m past that now, but seriously unimpressed with this treatment, and will continue talking to them about it. And will trust them with my future wellbeing, probably. I am prepared to walk and wear the delay if there’s anything else I don’t trust.
Rant over, but so disappointing and in such contrast to a lot of lovely treatment everywhere else. Thanks, Genesis Cancer Care!
Btw, we’re all looking forward to you taking us to Japan with you:-)
Brink I hear you on the port. I was so pleased to have it, and would keep it if there was a reason. I do feel strangely lighter without it.
KK sorry you still have surgery ahead. It is a marathon! Keep loving yourself with exercise and good eating- it will pay off.
Thanks for mentioning zometa, Tigerlily. I have a couple of friends living with Osteoporosis and it is is definitely worth avoiding.
Xxx
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Brink - wishing you good luck with your first AC tomorrow! I hope the side effects are easy for you, but I'm sure with all your chemo experience so far you will manage it well.
Sue - how frustrating about the radiation coverage! I hope they are more transparent going forward. When do you start?
Wanderweg - I saw the pic you posted on the August thread (where I lurk to see what's coming up!) and you look fabulous! Love the term sineading, too
Piksie - thinking of you and hope you're doing well.
I am trying to accept my decision to let chemo end halfway through taxol. I have been trying to think of it as though I had another, shorter regimen like TC. Thanks for that suggestion Being. Now waiting to hear when rads will start, and have my first appointment with the trial oncologist on Feb 11. So still plenty of treatment to go. I don't know if the change in schedule with impact the Japan trip yet... here's hoping not! Take care everyone xx
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Tigerlily - Safe travels!
beeline - I'm glad you have some peace about the treatment decision. I just have to trust that the oncologists want to see us better and are weighing pros and cons of each choice. (I'd go mad if I didn't.)
KK - Please keep us posted about the trial.
Brink - Haha - yes - the TEs did feel kind of like a big port. Hard and uncomfortable under your skin.
Met with my MO Friday and had my port accessed for what I hope is the last time. When I asked if I'd eventually be switched to an AI, he said he wants me on tamoxifen for ten years and then we'd discuss what's next. Talk about a long-term plan! My labs came back good - liver enzymes okay and cholesterol has actually dropped significantly from 218 last January to 166 now. I am guessing having switched to a mostly plant-based diet is largely responsible for that change. When the oncologist came in, I saw he'd grown a beard and he said, "You've grown some hair!" and I replied, "So have you!" I'm going topless all the time these days, even at work. And although we had a brief run-in with the polar vortex, the weather was insanely nice this weekend so we've gotten in lots of long walks, including along the river at a bird sanctuary yesterday. My hair is looking more and more like, well.. hair.
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KK, good luck for surgery decision. I had my BMX with Diep. It's been 2 weeks. Still on recovery path. But If you go for Diep and have any questions, feel free to pm me. Exercise and good eating habits do pay off. I continued walks during chemo and even before dx, I was finely active. It has helped me immensely during recovery
Tiger, thanks for info on zometa. Will check with my MO. Good luck for your trip. Hope you get much deserved time to enjoy along with official work.
Beeline, glad that you made the decision and are at peace with it. Hoping that the changed plans do not affect Japan trip.
Wanderweg, looking awesome. My hair growth is at similar level like yours. surprisingly I am seeing more grey hair than I had earlier. But going to be thankful for the growth instead of feeling sad for grey hair. Learning to be thankful and to count the blessings. Great that your lab counts are good. And the conversation with your MO made me smile!
I'm doing better now, 2 weeks after surgery. Been able to do activities independently. PS and MO said it all looks good. Looking forward to feeling normal after recovery though I know it is going to take time.
Have a great week every one!
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wanderweg, you look fantastic!
Being, glad to hear you are on the mend from BMX and diep. I hear that can be quite a long recovery so it's great that you are already able to do some things independently.
Hair-wise I am SO grey! I am also going with being thankful for hair, and I was quite grey before but now it seems everywhere. I'll try to post a picture if I can get a good one of my eyebrows
What's everyone doing for endocrine therapy (for those that need it)? I know wanderweg you're on tamoxifen and tigerlily, you're doing OS and AI. I'm sure I'm missing some conversations. I don't know who will be in charge of that part of my treatment, if it will be the trial MO or my regular one. I did discuss the results of SOFT/TEXT with my regular MO. He said the way he likes to do it is start with tamoxifen, then if I tolerate that ok add OS, then if I'm still ok swap in an AI. But he was also very flexible about approaching it differently when I mentioned I was worried about the tamox exacerbating my migraines.
Hope everyone is having a good start to the week. brink, let us know how you're going after your first AC.
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Wanderweg - Nice picture!
BeingPositive - Good to hear you’re recovering well from the surgery. Did you get all the drains out already?
Just finished my 1st AC and I think the pre-meds worked quite well! Going into infusion I was feeling a bit nauseated from the oh-so-healthy morning veggie juice and smoothie regimen, but after the meds the nausea was gone. So much so I was able to go out for lunch afterwards. Hoping I can keep all the food down!
My MO did note that my liver enzyme levels have been a bit elevated since surgery. I wonder if this is a delayed reaction to the accumulated Taxol or from the surgery? Thankfully the levels seem to be coming down little by little so I was able to get AC today without problems.
It is strange to have the Neulasta patch stuck to my arm. It’s bigger than I thought it would be, like a small digital kitchen timer. I’m afraid to rip it off when I’m changing. I hope I won’t be too shocked when it pokes me tomorrow.
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BeingPositive - Glad to hear you are on the mend. It really is one of those a-little-better-every-day things. And I'm sure my gray will eventually resurface!
beeline - Thanks! I'm always fascinated how MOs all have their own protocols they like to follow. Which makes me think there are lots of ways that work with endocrine therapies.
Brink - One AC down! The neulasta onpro won't poke you tomorrow - the cannula pokes into you when they originally place it on you. What you might feel is a little weirdness as the neulasta starts infusing. I don't know if where it is placed makes a difference with that - mine was on my belly. Claritin and advil really helped me with bone pain (I discovered that AFTER the first round).
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beeline - Somehow I missed your post when I was posting, since I had an older version of the page loaded on my phone. Thank you for asking!
Now that it's been several hours after infusion I am starting to feel a bit of nausea. Like I've been reading in the car nausea. I think I'll take Compazine so I can have dinner...
I did ask my MO about her plans for endocrine therapy today and she also said something like OS + tamoxifen for a couple of months, then switch to AI. She will do blood test to see if I'm on permanent menopause after I'm done with AC and that'll help decide whether OS is necessary.
I do have an ovarian cyst so I'm considering taking out at least my left ovary. Since my mom passed away from ovarian cancer (from her left ovary) and both my sisters also had cysts on their left ovaries, I'd feel better removing it. Hopefully it can be part of my DIEP flap surgery. Something to talk to my OBGYN about, after my ACs...
Wanderweg - Kind of weird that the Neulasta already poked me and is just staying put for 27 hours before infusing. I guess they want to make sure it's properly inserted...
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Hello All-
BoE - I hope you are holding steady after your first AC. I know I was lucky, but I followed my anti-nausea regimen to the T and I got through pretty unscathed (ironic how my former self would describe unscathed and how I describe it now). Just try to keep up with the fluids. I lived on decaf english breakfast tea with milk and a bit of sugar - it was the only way I could ever reach the volume that was recommended.
BeingPositive - I would love to hear how your DIEP went. My PS says he won't touch me for a year after rads - so Spring 2020. It feels like a really long time to have these damn TEs in, but I am slowly getting used to them. I can't say I can sleep comfortably on my stomach, but I haven't really done that since I was first pregnant 11 years ago. I debated between implants and DIEP for the last 6 months. I'm pretty sure I'm all on board with DIEP now.
Beeline - you inspired me to interview for a different job. It was hard not feeling self conscious with extra weight, a wig and pencilled in eyebrows, but I think it went well. It's a bit of a reach as far as my skill set goes, but we shall see. I'm glad I did it. RE: endocrine therapy - I haven't been given any idea what will be prescribed. Obviously if we get into any of these clinical trials we will have to do OS + AI. I'm not sure how long I will want to do OS before getting them removed. I'd really like to reduce my number of Drs visits. I'm also slightly irritated because in my post Dr visit research UPENN only does PALLAS not MonarchE - but a local hospital does MonarchE but it is a competitor to my current hospital. I know everyone loves these big cancer centers, but if my local hospital is running the trial and it is 10 minutes from my house AND it is a "better" cdk4/6 as far as side effects go I wish I didn't have to get into it with my MO. I'd rather not drive 2 hours ESPECIALLY if I don't end up on a treatment arm! So now I have that email/phone call to make. Ugh.
I called my MO today because the leg muscle myalgia is not improving at all. I'm not sure how I got through 20 weeks of chemo with minimal side effects and now have to deal with this, but they want to double check I don't have any clots, which is highly unlikely since the pain is bilateral and even - like I ran a 5K or did 100 squats or something. A clot would be most likely isolated in one leg. Another drs visit, another copay. comme ci, comme ca.
It is 60 and sunny today - a 55 degree increase from a week ago. I am not complaining about THAT
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Thanks KK2018! I was eating rice crackers and drinking tea and now I realize I should probably stick with decaf. Trying to eat whatever I can stomach now that the compazine has kicked in.
Since my brother-in-law is from LA, I totally rubbed it in on the Patriots/Red Sox wins. I was never a sports fan but it was fun to have something else on my mind.
The weather outside looks gorgeous and I’m debating whether to go out for a walk. Throwing up on the side of the road doesn’t sound appealing but I may just grab a bag and go for it. So far the meds have been holding up so I should be fine...
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Hey ladies, it sounds like everyone is making major progress! Wanderweg, I'm seriously envious of your hair....you look great! And Beeline, I'm glad you were able to get ok with your decision. That sounded really tough.
I've been sick, which is so weird after finishing chemo. I had an infusion of perjeta and herceptin a week ago, and now I have that horrible gut pain and diarrhea again. I saw my onc last week, and he said he didn't think it was due to the infusion, but I had another infusion on that day, and here I am again.... It's bad enough that I had to take off work yesterday and I've lost 4 lbs over a day...making me think I might be a bit dehydrated. So I've cancelled what I can and am drinking every bit of water I can get down.
I think I'm just really mad that this is happening now, when I thought it would be easy after chemo, you know?
And the icing on my cake is that my blood work has gone weird. Apparently my mild anemia got worse last week, so ONC ran a ton of tests. My iron levels are extremely low, but my ferritin levels are extremely high, which is worrying. I know he'll call me when he gets all the blood work back, but in the meantime.......this ain't fun!
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Fairchild - It is too bad you still have such stomach problems to deal with. Hope it’s just a matter of your body adjusting to it.
Last night I felt so good after my walk that I decided to skip my Compazine for the night and that was a big mistake. Woke up and had to take one to go back to sleep due to nausea.I’m back on it now and hoping tonight will be uneventful.
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Ah Brink and Fairchild and friends, it is indeed not finished with us. I’m 2.5 weeks PFC, and beginning to be able to remember my name without prompting. But! My big toenails are lifting, my feet are swelling quite a lot, I have NO eyelashes and I’ve put on several kilos. I really hope that is just fluid. I lost my engagement ring when I had to take it off my swelling finger and then was too absent minded to save it. At least I saved my wedding ring.
Anyway, wish me luck. I’m going to try weaning myself off Imodium over the next few days
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Fairchild - I’m sorry you are having GI issues with the her eating and permits (which still seem like chemo to me). And also about the worrisome blood results.
Sue - I thought I was in the clear for nail charges, other than ridges, but about a week ago one of my nails went wonky and seems to be lifting. And I’m 13 weeks PFC! Also still having memor/word-finding issues.
I had my surgery yesterday morning to remove my port. It was quick and I was only under for about 20 minutes or so. But last night I noticed I had dark bruises on the dye and underside of my tongue! This was my fifth surgery with this cancer and I’ve never had that. I’m hoping it was caused by the breathing tube and sent my breast surgeron a message this morning asking about it. But of course, I stayed up late last night googling symptoms of lymphoma and other helpful lines of inquiry. Because that’s always my first thought - like, oh my god, did the cancer spread to my tongue?
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Beeline, I am on lupron+ letrozole. I had started it 4weeks PFC and tomorrow going for my third lupron shot. It was fine till now. But this week I am having some back pain, not sure if it is due to letrozole or because I am still recovering from surgery. Will check with MO tomorrow. Have you decided about which hormonal therepy you are going with?
Brink, glad that AC first round went well. Hope nausea is now in control. My all 4 drains were out by 2nd week. Met PS today and he said that everything is looking good. Hoping recovery will stay on track.
KK, I feel Diep has been a good decision for me. Yeah, recovery is longer and tougher, but I am happy with the results. PS said that stage 2 will be in April. As always every option has pros and cons, select the one that you feel most comfortable with. Best wishes to hear back from the interview. How did the doc visit go for leg muscle pain?
Fairchild, sorry about the pain, diarrhea and blood work counts. Really hoping that you can get some relief.
Sue, feet swelling could be due to water retention. I had it after chemo and surgery too. Elevating feet helped.
Wanderweg, even I feel chemo drugs are still working. My nails are turning blackish now. Earlier only thumbs were like that. And yes, I too have word finding issue. Feels weird and helpless that simple words won't come out! Glad that your port came out. And I can relate to the thought process. When this week had back pain, my first thought was oh, is it spreading though I am not even recovered from first one!! I too started searching and then found that it is main SE of letrozole. I am worried about it being SE too. Just hoping that it is nothing but body taking time to heal. Going to see what MO says tomorrow. What did your BS say? I think we will have to teach our minds to stay positive.
Peace and strength to all.
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Hey from Honolulu...
Brink: using a Phyto growth serum and shampoo (no supplements). Hair is going good. Thick and soon it may not be sticking straight up from my head! Beeline: glad you had a decision and it sounds like a good one. Sue: sorry about the insurance/payment hassle on top of all else. Wanderweg: you look beautiful. And wise.
Fairchild, how are your GI issues?
My trip to Honolulu has sucked. Cancer sucks. I had a great day on Friday, despite the jet lag. All my favorite things and I was in a fuck it, don't care how much it costs mood. Yoga, massage, a little shopping, walk, lunch, swim in the ocean, amazing dinner. Saturday I worked out and then we headed up to the North Shore and then my abdomen started to hurt. I've had this before - pre cancer - a few times. And had pretty bad pain a few days. After a few days of prilosec and tums it goes away. I never go a real diagnosis. Stupidly I kept eating. I was fine through Saturday but spent Sunday in a ball all morning and watched the Super Bowl outside at the hotel bar sipping water but made it through barely. NOTHING touched the pain. I did not eat between Sunday and Tuesday. The only symptoms are a little gas and horrible pain all around my upper torso, front and back. Now, finally on Thursday I can sit with no pain but it kills when I move. Like I did a million abs I didn't do or I was punched. I am eating yogurt, muffins, and smoothies and collagen water and making it through my meetings and sleeping. I'm guessing GERT or gastritis made worse by the chemo. I don't think it is the AI/OS or rads - too far out. And I have no idea what set it off except maybe too much to eat Friday night and too little sleep. Oh and my chronic cough I'd finally gotten rid of with my supplement regimen is back so maybe I did used to have acid reflux. So frustrating. I didn't get in touch with the doctors because I figured they'd start pointing me to the next one. I see my naturopath on Monday and my primary in two weeks and so forth so hope it gets better. My blood work from last week was all perfect.
Anyone else? It just sucks. Inflamed stomach in Hawaii. No Poke.
On a positive note my hot flashes, 3 months PFC and a month into AI/OS are pretty much gone....I have that going for me.
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Tigerlily, has any Dr looked into hiatal hernia? I started getting the pain & was diagnosed with it after barium xray of my stomach. Also tend to have a cough with it. Mine is ok so far but at some point will need to have surgery. Just a thought. Hugs
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KK - amazing! congrats on the job interview and keep us all posted! I think it takes way more spirit to do it now than when I did it mid-AC. Looking back, I realise I was still quite happily in denial about how hard this was all going to be. But probably I had to be to keep going. I hope you get good news, though if I remember right you were working with your husband and business partner so it would be quite a big change! How annoying about the inter-hospital rivalry. I hope you get the trial that's right for you (and even better if it's only 10 min away).
Tigerlily - ugh, I'm so sorry about your GI symptoms. Cancer really does just f***ing suck. Could it be residual SE's from rads? It seems all RO's say nothing except skin stuff is from rads, but I've heard from lots of people who had GI issues like nausea and heartburn. In any case I hope it gets better soon and am sorry it ruined Hawaii for you.
Fairchild - I'm sorry you are have such miserable GI effects, too. I agree it seems especially unfair when you feel like you're supposed to be through the hardest part and getting better. Hope there is a solution for you soon.
Brink - sounds like you are holding up super well on AC. I am so pleased for you! I was knocked down by nausea a couple of hours after each infusion and then it lasted 5 days each time, so I think you're going to avoid all that and do great.
Being, thanks for sharing that you're on lupron + letrozole. I hope the back pain ends of being nothing and goes away on its own. I will definitely be trying OS + AI. My MO mentioned aromasin, and possible starting on tamoxifen but I am tempted just to go for the big guns and hope the SE's aren't too bad. Let us know what your MO says about the back pain.
wanderweg, great that you have your port out but what a weird SE. What did your BS say? I am also still completely in the throes of chemo brain. It's like my brain is stuck in first gear on a manual transmission car and I can't shift into a higher gear no matter what I do. I'm trying to be patient though.
I'm sorry to everyone who is having belated SE's. I am 3.5 weeks PFC now which feels weird because it wasn't planned that way. Still lots of fatigue, leg aches/heaviness, and the same neuropathy symptoms (hands and feet tingling and numb all the time, can't open some things, etc.). It's not so bad though and I am trying to enjoy the little break rather than worry about what's next though I should have heard from radiation by now.
On Monday I have my first appointment with the trial MO for MonarchE. I am already nervous looking ahead because it looks like screening required CT and bone scan after I finish rads. It's like I'm having premature scanxiety. I almost feel like if my cancer has managed to grow or spread during treatment I seriously do not want to know. But of course that's not really true. Anyway, on the upside the appointment is about 2 hours away in the town where my sister-in-law lives, so we're planning to have lunch with her after the appointment. Something to look forward to in all of this anyway.
Hope everyone has a relaxing weekend. xox
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Hey everyone. So, I spoke to a nurse at my cancer center this morning and while they cannot completely be sure from 5000 miles away, it appears that I had a rare reaction to Zometa. I started to google and suspect my symptoms were not really GI, especially the fatigue. My appetite is back, the Prilosec did nothing, and I think I mistook severe muscle pain for acid reflux. Might have had a touch of it. I am getting better and right now just feel tired and like I pulled a few muscles around my right ribs, but mostly when I breathe or move. Will go In if not better by Monday. Morale of the story, no new drugs or infusions before going to Hawaii or anything big planned. So if you end up going down the Zometa route, be aware. They really downplayed it for me.
At the airport now waiting for our overnight flight to Atlanta, and then on to Boston. Have a good weekend all. Good luck on Monday Beeline
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