Starting Chemo in November 2017
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Iris...I bought a box of organic beef bone broth once and I gagged! Had to throw it out. I love homemade chicken broth. Have never made the beef broth.
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my mom used to buy beef bones and made one incredible beef veggie soup stew! It was amazing! Her stock was always from scratch. Me i just simmer all leftover bones for broth
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Hello my lovelies finally got a chance to catch up. Hugs and kisses from the Caribbean. I know its cold in your neck of the woods so i'm sending some warm hugs and smooches. I am happy that everyone is still coping by the grace of God. I have completed my chemo and radiation my doctor told me to go live my life don't worry or take on too much as stress is not good for me. I have to return in Dec to do some tests which starts the new baseline for monitoring going foward.
Yes health care is ridiculously expensive, no strike that, cancer care is ridiculously expensive. I thank God everyday that my job has an excellent health plan most of my bills were 98-100% covered so I did not have to utilize the public health care system in my country.
Right now I am exercising and trying to eat right but that too is expensive, organic foods are costly. I have not juiced in awhile and im missing it but its hard to keep up. It seems like everyday there is something on social media with these food manufactures and syntethic stuff in foods that are killing people slowly you have to be so careful.
I am also on the hunt for a real strapless bra with pockets for a breast form. Not those Coobie uniboob tube top type bras. I tried them and its a big no for me. I really want to be able go wear my strapless and off shoulder clothing again. Can anybody recommend a strapless bra?
How long does it take for the radiation site to heal up? My radiation has been completed about 3mths and the area still feel hot to me. Bas anybody experience this?
Anyway have a great week folks. The race is not for the swiftest but those who endure to the end. Kicking cancer to the curb one day at a time.
Smooches Dark13
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Hello, all - Hope everyone enjoyed their Thanksgivings.
I had my FINAL Herceptin/Perjeta infusion on Monday, and surgery to have my port removed on Tuesday! It was a long road to reach this point, but I'm NED with Arimidex as my my sole treatment going forward. A few side effects to from that to contend with, but feeling pretty good overall. So much to be grateful for this year.
Dark13 - I haven't tried it, but Amoena is a company that specializes in mastectomy bras and they have a strapless model that looks promising: https://www.amoena.com/us-en/pocketed-lingerie/bar...
Mostly positive reviews (and potentially lower pricing) on Amazon: https://www.amazon.com/Amoena-Barbara-Strapless-Co...
Or this one? https://www.curediva.com/seamless-strapless-bra.html
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Hi Everyone, Merry Christmas and Happy Holidays.
I had Sepsis AGAIN the day after Thanksgiving. That made my 3rd trip to the ER and hospital stay due to Sepsis. Its scary. It comes on suddenly without warning, and Very Painful. I cannot walk. My Dr's tell me it has to do with my lack of immune system, my oncologist says it has nothing to do with my treatments nor cancer. He came to my hospital room just to tell me this. (You all know how I feel about him!) Since my Dr's (infectious disease Dr, Pulmamary Dr, Rheumatologist, Internest Fam Phy all have no idea why I keep getting this - I am in seclusion. I rarely leave the house and if I do, I wear mask and gloves. No one is allowed in my house. I should buy stock in purell.
my relatives dropped off on my porch gifts - I look at them and all I see are germs.
Take care - rj0 -
Ugh, RJ, I'm so sorry you're going through this. I hope this is the last bout of sepsis and that 2019 will be better and brighter for you. You've had a tough two years.
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rljes.....So very sorry to hear this. Hoping 2019 is a much better year for you. What a dilemma. I love my peace and quiet, but not like what you're going through. Hang in there!!
Hope
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I hope everyone is doing well. I enjoyed reading your recent posts. I had risk reducing hysterectomy with ovaries and tubes removed on Dec 28 because I’m BRCA plus a reconstruction redo on the cancer breast at the same time. I’ve been fighting scar tissue and lymphedema in that breast after my infection in April and implant replacement in May. Good news is that all the pathology in scar tissue and lady parts was benign. Also that breast feels and looks much more normal.
I am also on Arimodex for at least 5 years. The onc wants me to take the bone density shot, but I refused. My bone density was good everywhere except femoral neck, and it was just a tick towards osteopenia.
I was feeling good before surgery, and my recovery seems to be on track. Maybe I’ve had my last major surgery for a long time!
My hair is still chemo curly. Maybe a little looser but not much.
Best wishes to everyone in 2019!
Lisa
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Hello OrangeDaisy and November bunch. I started chemo in December 2017 and benefitted greatly from lurking here and learning how you all dealt with your chemo and SEs. So thanks.
I am also on AI for the next 5 (10?) years and just wanted to add a note about the bone density shot. I also had a touch of osteopenia but was persuaded to take bone strengtheners (currently, the alendronate pill, once a week) because my MO believes the data is showing that bone strengtheners can reduce the risk of recurrence in the bones. Below is a link to a recent "meta-study" from the UK that supports the approach. Also, if you search the main BCO.org site for bisphosphonates and recurrence, you can find (among others) the link below. It's a little dated and I think there are more recent studies, (I wish BCO would display search results with clearly shown dates.)
I just started taking the alendronate and I'm not scheduled for a Dexa scan for 2 years, so my little data point won't be available for a long while. But I first stumbled onto this information on BCO and I'm for most anything with science behind it that might improve my chances of avoiding recurrence. Just my $ 0.02.
Mindy
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Thanks for that information Mindy. It’s good to know. So many decisions on what to take and not to take. I would like to go back to the days when I didn’t ponder whether something caused or prevent cancer.
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Hi Everyone,
I ventured out to get my Herceptin IV treatment without a mask today. (Did wear gloves) No signs of Sepsis so far - so good. Still afraid to go visit my Mom at the nursing home.
My Pharm Oncologist stopped by to give me info about ANASTROZOLE (Arimidex) I see you started taking it Orangedaisy - I didn't expect her to write a script so soon - but here I am staring at the bottle. She wants me to get started so I can start "the Herceptin Pill" (NERATINIB) after my last (one more to go) Herceptin IV/ - a long separation between the two so I can see what Side Effects go with what. She said the Neratinib studies (new FDA approved June 2017) have been remarkable to prevent reoccurrence. She also said the SE's were minimal. Not what I heard - of course I had to go on the FB Neratinib Forum. We shall see!
Plus she prescribed OXYBUTYNIN for my sever hot flashes I've had since chemo. When looking it up it says for bladder control (which I can use) says nothing about hot flashes. I'll have to check with my urologist before taking.
Hope everyone gets thru the snow storm tomorrow safely. Rj
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Hi, all! Nice to get updates from some of you. Sounds like we're all still pretty busy....
I am 6 months in on Arimidex and doing fairly well. My MO prescribed low dose Effexor (37.5 mg) to alleviate hot flashes, so I'm interested to hear from RL re Oxybutin.
My primary issue for the past few months has been fairly severe intestinal gas and bloating that is physically uncomfortable. I finally got in to see a GI specialist on Friday and he prescribed a low FODMAP diet for the next 4-6 weeks. Boring, but doable for that time frame. And it seems to be helping already over the last 3 days.
The thin spot I had on the top of my head after cold capping has filled in well and the shortest pieces are now about 5 inches long. I can get them to lay more or less flat and blend in with the layers I had cut into my jaw length bob so that the style looks almost intentional.
My leg hair, which came back quickly after chemo, has very nearly stopped growing. Not sure if that is due to the Arimidex, but it is one side effect that I'm enjoying!
Took a pretty bad spill on wet sidewalk last week and bruised my palms and right ribcage (but no broken skin.) The former are much better but the latter is still sore with reaching, twisting, etc.
Stay warm and safe!
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Hi all, so nice to hear from you. I'm doing well, and adjusting to a new normal. I had my final chemo in March, then a prophylactic MX 4 weeks later, and then radiation 4 weeks after that. I stopped covering my hair about 3 months PFC, in June. Radiation was not fun, but recovery has been okay. In October I had my ovaries removed and completed reconstruction.
So I'm 38 and experiencing some minor side effects of menopause -- mostly just occasional hot flashes. I think the moodiness and fatigue could just be life with small children, but I suppose it is compounded by the hormonal changes in my body.
I started Tamoxifen in May, and so far there haven't been very obvious side effects (I broke out in hives in the beginning and had some achiness, but that seems to have disappeared).
I'm otherwise doing okay, though dealing minor lymphadema and cording (15 months after MX!). PT seems to be helping a lot, thank goodness.
Wishing you all the best!
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miss you sisters . where are you now?
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I'm still here -- done with treatment other than tamoxifen and some pt for minor lymphadema and cording. See above post for details. How are you, Hope?
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hi everyone !
magari - I see my urologist next week, and I'll find out about Oxybutin and share if it helps with my hot flashes if allowed to take it. Does Effexor help with your hot flashes? I started having severe hot flashes as soon as I got DX and stopped my Estrace pills. But they have subsided - not so intense anymore.Started my anastrozole pills last week. Starting out taking a pill every other day. (my choice - My MO doesn't know nor suggest) I'll start daily tomorrow.
Take care all! Rj0 -
Hi there! Had the LAST of my 17 herceptin & perjeta IV treatments this past week. Sometimes I felt like this would never end, and now it's hard to believe they are finally done. Overall, I'm doing well. I have my pre-chemo energy level back. Hair is growing (very gray, but growing). Eyelashes and eyebrows are not coming back as strong, which is unfortunate. I had great eyebrows and decent eyelashes before. Lost 2 1/2 fingernails, and they are slowly growing back in. And, apparently a very rare side effect of taxotere can be complete loss of smell. I haven't been able to smell anything at all since around June. I have insane hot flashes from the tamoxifen, and am taking 150 mg of effexor. I don't have as many with the effexor, but I stil have 4 or 5 intense hot flashes every day. Oh, and now I have Raynaud's along with my peripheral neuropathy.
Ya know, I would do chemo again because I want to be alive, but geeze! This is not for sissies!
I'm very glad to read the updates from everyone and see that overall, you guys are getting your lives back, too. It's been one helluva year and a half!
You might want to turn your volume down if you watch this... I hit the gong super hard!
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Hi Meowmmy - Congrats on last Of Herceptin! My last Herceptin was last week too! Yeah! I was never offered Perjeta. I;ve had Raynaud's for about 15 years. Its been getting worse since Herceptin. My Rheumatologist wants me to take "Viagra" for blood flow to my fingers. Hummmmmmm. Now my MO wants me to take the new Nerlylnx pill. But I need to get Arimidex under control first and its SE's. My hot flashes are out of control. MO prescribed Oxybutinin to relieve the hot flashes (tech its for bladder control of sorts) I've been taking it for about 2 weeks and no relief. I'm one big long hot flash. I have the heat off, windows cracked and my dog is freezing. Ha. Take care, rj
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Hi everybody - long time since I was here, but thought about you all and wondered how you were all doing. Congratulations Meow - what a long journey. I’d be dead by now going through what you, Rljes and other have had to deal with. I think chemo was killing me slowly. You’re all so amazing. I can’t believe it’s been a year now since my last chemo treatment. I know my radiation had started the end of February last year.
I had my correction surgery on my cancer breast done in December. My PS wanted to reduce my right side also, but I think he made it too small - so nothing really improved much! I give up - just will be deformed I guess. Other than that I saw my oncologist mid January and bloodwork was at least good. I’m on alendronate and letrozole. My dexa will be done in Spring. My back is much better, but sewing, or painting will aggravate it sometimes. I have slowed down so much from exhaustion. I’m trying to exercise by walking, but the weather messes me up. I went to swim classes all summer and fall last year - best for my healing back.
My hair is not growing very fast and it’s still curly. Yuck! I had it professionally trimmed before Christmas, but it’s still a curly mess. I’m about ready to shave it off really short and wear my wigs again. It hasn’t grown below my ears yet and it’s all out of shape. It’s so stiff and curly in the back that it just flips up in a tight roll. My bangs are somewhat straight, but it’s all a mess and I can’t do anything with it. Even a flat iron doesn’t straighten it at all. It’s wirery.
Other than that, I’m trying out a new hobby of reborning these lifelike dolls. I love to paint them. It has kept me very busy. I’m not a doll person in that I collect them, and I definitely don’t role play with them, but the artistry is so fascinating, so had to venture into this hobby. It’s nice to live normal again and be able to do my fun things again and not worry about cancer.
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Good to hear from you Blair! So glad to hear your back is a bit better. Wonderful that you have a new hobby. I can't seem to get off the couch. My hair didn't go curly, but its a mess, I keep it short and wear my beanies.
Take care, Rj0 -
So good to see you gals. Glad everyone is doing fairly well. I have been on Ibrance/Letrozole for the past 10 months...just started month 11. I was also getting Xgeva injections once a month. My scan last month showed possible ONJ. So, I'm off the Xgeva for now. I have a dental appointment in a couple weeks to get x-rays etc. to confirm. My neuropathy has been bad enough that I haven't driven for the past 10 months. Hoping that eventually it will subside enough so I can at least drive. I hate depending on people. Other than that, I just am a slow-poke with my trusty old cane.
Wishing all of us better days ahead.
Hope
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Hi, all!
I'm 8 months in on Arimidex. Which l take before bed, along with 3mg Melatonin and Ativan (for sleep) and 37.5 mg Effexor (for hot flashes). The latter were getting better for a while, but have been more frequent in the past few weeks, so I may increase that dose to 75 mg. I see my MO on Friday and will ask.
My other main side effect these days is uncomfortable gas/bloating. I've been to a GI specialist, and tried a low FODMAP diet, which didn't seem to make much difference. He said it could be the Effexor, so I will also be asking my MO if there's an alternative to minimize the hot flashes.
Otherwise doing pretty well! My energy level is slowly getting back to normal nearly a year post final chemo. My hair is curly and wild, but thick and the shortest bits are starting to blend in with the rest of my chin length bob.
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Hi Rljes, Nonahope, and Magari,
I was hoping someone would keep coming back here. We all sound like we are straggling along. I thought I was ok, but last week I overdid my yard work. I realized I don’t have the energy I once had and I made myself sick with exhaustion. I wasn’t out that long cleaning up the yard and I really thought it would be good exercise. Wednesday I had heart palpitations and I felt totally exhausted with joint pain, muscle pain, and just worthless. I almost had a panic attack just from feeling exhausted. So I have just relaxed doing nothing but small stuff. My work just piles up.
I wonder if these hormone pills make us feel more tired. I hate being on so many drugs. I look awful. I have aged so much this past year. The hair bugs me. Now I’m trying to wear it behind my ears, but it’s not long enough to stay. It doesn’t grow as fast as it use to. Taxotere must have stunted my hair growth. I wonder if I should shave it off and let it grow in again. It’s at least a little thicker and doesn’t fall out like it use to.
Nanahope - how frustrating not to be able to drive and I’m sorry your neuropathy is still plaguing you. I hope the ONJ is not happening. It seems these drugs can cause more problems than any good. I hope the best when you see the dentist.
Rljes- try walking short distances to get some exercise. Just don’t over do it like me. However if you are in snow - might not be good.
Magari - when you said Ativan - I cringed as that’s what caused me to collapse and fracture my back. I guess some people can tolerate it better. I can’t take OxyContin either as those drugs just wipe me out. I sleep like a rock anyways. Hope there’s a better alternative drug for your hot flashes.
It’s good to hear from you all. Keep positive - Spring is near and I always love that season the best. It puts color back in life
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Oh Blair! I know how you feel! I would have a 'good' day and start a small project (living on acres of woods - there is always something to do) and really pay for it the next day or so.
I'm starting Tamoxifen tomorrow. I so hope it doesn't make me more tired than I already am. My Hair is growing so slowly, I gave up and wear a beanie all the time. My heads always cold (the only part of me that is) Hot flashes are insane! I had to change my night clothes twice last night - I was just drenched, then started shivering because I had the heat turned off - so I was cold and wet. Geezzz… I'm sure more treats to come with Tamoxifen! Take care everyone- Rj
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Yep Rljes - I hear ya. Never a dull moment. I can’t even walk as far as I use to and the weather stops me cold. Hopefully the Tomoxifin doesn’t give you any negative effects
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Hi Blair - I'm still staring at the unopened bottle of Tamoxifen. Hope you are well!
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Hello all,
Yesterday was one year PFC! My hair is super curly, but looks cute and deliberate now. I've cut it three times, I think, so that it has a bit of a shape and doesn't look like a mullet! I've got my lashes and brows back. I've found my skin is more sensitive since chemo. When it's dry, there's a biting sort of tingle, so I have to keep it constantly moisturized. It gets irritated more easily -- like where my bra clasp is is constantly itching. Occasionally I notice some tingles in my fingers that are probably some form of neuropathy, but overall, my side effects have been minimal.
I rejoined the gym and go pretty regularly, tho I am not doing anything intense. Only light cardio, yoga, basic strength training, and not for very long at any given time. But it's helping me build back stamina and strength. I could stand to lose some weight, but I'm focusing on being healthy and strong.
I had my exchange surgery, a prophylactic mx, and prophylactic removal of ovaries and tubes. Menopause symptoms are not terrible, but they are there. Minor hot flashes and fatigue, some dryness.
I've been on Tamoxifen for ten months now, and it's gone fine, though I'll probably be switching to an AI soon.
Reconstruction is not fully complete -- still need to reconstruct the nipple. My two breasts are not totally even, but I'm not sure fatgrafting is worth it. I think I'll do the nipple recon and see if I feel better about uneveness. I think fatgrafting can't completely fix the issue, as the cancer side has been radiated and the implant just doesn't "sit" the same way. The PS said the way the MX is done can also cause some differences. Anyway, it's not obvious to anyone but me that one side has a little more cleavage than the other, and likely I won't do anything beyond the nipple recon.
I am beginning to settle into and accept my new normal. I hope things are going well for all of you.
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Hi Star2017, Hi everyone!
Star, I'm so glad to hear your doing well. Impressive going to workout. I can't seem to get off the couch... but will continue to try.Question for you plz, Why are you switching to Arimidex? I just switch from Arimidex to Tamoxifen.
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Hi rljes,
Re: working out. I'm surprised myself! I've never been one to exercise really at all, but I've felt so weakened by this whole process, and I have found a gym with a nice daycare where I drop the baby. It motivates me to take a little break, even if it's just 20min of exercise. Plus, if I don't go regularly, he cries more because he isn't used to it, so there are multiple benefits to going regularly.
Re: the AI. Apparently the AI are more effective (slightly) than tamoxifen. Plus tamoxifen has that slight increased risk of uterine cancer. The downside with the AI is the increased side effects. Now that I'm in menopause due to the surgeries, it's worth trying the AI. If I don't do well on it, I'll switch back.
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(ie my one boob) prevent me from wearing the clothing I want to wear...