Starting Chemo September 2015; join us!
Comments
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Cajun - ok the alcohol thing is a drag! I was told 3 drinks per week max. I like a glass of wine now and then or a cocktail. I am trying to limit but not exclude totally. I wonder why you got the abstinence direction? I would ask. Are you familiar with Izzy sparkling juice drink? In health food part of grocery store. It's delish. I drink it from a stemmed glass. Feels like dieting special. Also sparkling water with a twist. There's something about the pretty, stemmed glassware that meets a need. Is your doc suggesting a bone strengthener for you
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Tessu - I'm sorry about the muscle aches! I describe my aches as joints but it could be muscles, too. It sounds similar to yours. Mine caw in gradually after a few weeks in Letrozole. I'm eager to see if the glucosamine chondroitin will make a difference. I started it yesterday.
I had my prolia shot today. It was in the arm. No big deal. I'll let you know if any dude effects show up. MO said I might get flu like symptoms and if so, to take a Tylenol. So far so good.
On another note - I went without my wig twice now. Both times to yoga class and I wore a hat that stayed on during the whole class. Baby steps.
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Ive never been big drinker. My onc definately recommending drinking in moderation only. On the way home now after a couple of wines in the boardroom after work. Just was thinking how nice it is to be able to do this simple things again. What a terrible year we've all endured. Do something nice for yourselves enjoy your weekend xxx
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Not sure if the alcohol ban is permanent, but I suspect so. Could be the sugar, or estrogen effect, or immune depression.
I've been eating honey lately...feel so guilty. Cancer guilt rivals mommy guilt. And they are intertwined so it's like 4 times the guilt.
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shelly, congrats on going hatless! I mean no offense by this statement, but I am growing a 'fro. Dark, think, and curly/kinky. I shaved off the blond chemo fuzz. My hair looks wild, I have no clue what to do with it.
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Embrace the fro Cajun!
I believe the alcohol restriction is because the liver creates something akin to estrogen when it processes the alcohol. Rotten liver.
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Almost 5 months pfc --- and I just realized I haven't had a fingernail crumble or rip painfully down to the quick for at least a week! So the chemo damaged part has grown out
Still battling toenail problems, but now there's proof now that this too will pass! Yay! 0 -
yay, tessu! That is one ugly SE I never had and it sounds awful. So glad you are healing
I ran a mile yesterday and it felt great! Doing one of those adventure races in November with my good friend (34), who is a two time survivor!
I am making some dietary changes (bye bye excessive honey) and have really moved my focus upward and outward and I feel great.
I made a huge list of all our accounts, passwords, etc for my husband, since I manage all the money. And then I let go. I have stopped blaming myself, obsessing over numbers, and worrying.
May God give you beautiful ladies a peaceful evening as well. Xo.
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random question - for those with HR+ BC, has anyone requested to have the molecular subtype tested? My MO asked for it pro bono and they did it... and luminal B is the winner, as expected.
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Well my surgery was a year ago so I doubt I can have it done now. I am stressing because I am going to have to go tamoxifen for the summer to try to get my hands back together and if I knew my luminal deal it would help. Up until now I have assumed that it is luminal B and had AI.
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exercise was the cancer on the left Her2-? If so, what was your ki-67? you can make a good guesstimate based on that although it's not definitive. your age also suggests luminal b. i asked my MO whether he would expect luminal b to respond more favorably to everolimus, since it tends to have more resistance to endocrine therapy and he said probably yes, but there are so many factors involved in endocrine resistance, it's hard to say.
I was wondering whether I had a rare case of basal-like, non-triple negative cancer, but not so.
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Both were grade 3 but I don't think they ran the Ki67 on it. There is not indication of it anywhere in my files but I called the telemedicine nurse to pull my files and help me find out if they even run it in this podunk town. The ER/PR right side was thought to be DCIS and they found the left first so Chemo was a go no matter what. Hence I do not think they ran anything other than markers on my right when they found the IDC in surgery.
my diagnosises was stupid
Right IDC 90-%ER+95%PR+HER2-(1.3cm,.5cm) plus a mess of DCIS two pockets in my breast that was hiding the IDC
Left HER2+++7%ER+0%PR(1.6 cm) found first so chemo was a go. only found the ER weak element after surgery.
Palb2 I actually found this after the double mastectomy . They had rushed the BRCA test but it took longer for the full panel.
So like you sucky sucky choices. I know tamoxifen is not as good for luminal B but Femara and Arimidex have crippled my hands. I need to do something for the summer and see if I can get them back. Then if I can I will try Aromasin but I do know the studies definitely AI is better for luminal B. I am feeling like a big failure over this stupid oophrectomy/hysterectomy and AI. It has hit me like a bus.
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noooooo....not a failure! I sometimes wake up with totally numb or painful hands. I definitely feel arthritic. All the estrogen blocking treatment is hard!!! All the treatment itself for luminal b is just...never ending. I'm so sorry you are in this position. Big hugs, mutant sister!!
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I asked the oncologist about my luminal type, but she said here in Finland if the bc is HER2+ that makes any luminal typing irrelevant.
After today's dose I will be halfway through my post-heavy-chemo Herceptin injections. Have been on the AI anastrazole since the end of January. I feel like 1000 years old when I struggle out of bed in the morning (stiff and sore everywhere) or if I sit in one place for too long, but my rheumatologist is certain the isolated joint inflammations I've had a few times are my vasculitis waking up after the chemo, and not an AI side effect, even though the locations are new. My left large toenail is still chronically inflamed; yesterday the hospital footcare specialist attached a wire to the nail to "lift" it a bit --- ??? ---- At least the procedure didn't hurt, but I'm having trouble figuring out which of my shoes I can wear that don't squeeze the swollen toe too much.
My best news: my chemo brain has definitely improved a lot over the past 5 months pfc. Not normal, still have annoying problems with memory, especially forgetting names of new people, also forgetting words a lot --- but mostly managable.
((((Hugs)))) to exercise and everyone else having major problems with estrogen blocker SEs ((((hugs)))
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hey tessu, good to hear from you, but sorry for all this nonsense still going on. Random thought on your toenail. I had an injury to mine in college and the scar tissue made the nail grow in incorrectly all the time. I finally had it removed and the nail bed burned off. Although it looks weird, it totally alleviated the problem.
Your MO is right about Her2+ and luminal type. Her2 overexpression is its own type, much like triple negative and basal-like.
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hi ladies hang tough. Its an up and down deal somethings get better some get worse. So Ilmy telemedicine nurse lookwd at my files she said absolutelyt clean sentinal nodes
Because leftt breast is the PR- that makes it luminal B the right was luminal A. Whatever
I decided to start tamoxifen today. I am going to stay on it until august or when my hands recover then try Aromosin.
Also the neurologist agreed to a brain MRI this week for the headache he thinks it is nothing but that we should find out. Also going to run an EMG on my hands to rule out carpal tunnel. Then I guess go from there.
Tessa I hear you on the memory stuff I forget a lot of things. Also I have heard taking Claritan with AI helps.
I am trying to go.on a low inflammation diet and maybe low histsmine. Not sure what to do.
Thak you foe the support
Cajun Thanks for the input I think you are doing the best treatment you can we all have to stay positive I am also going through changes to.my diet. I want to post more on that later
Shelly yah on going wigless. It is too hot for me to stand the wig anymore. I hatey pixi but owel. I appreciate your posts
I am reading ladies just also trying to stay our of a giant pit of pity party
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Hi el Tigre,
I had an MRI for headaches that started during radiation last mont. I finished 6 weeks of Chemo 12/14 and had breast conservation right side and left lumpectomy(benign).i had positive lymph nodes and 8 axillary nodes out ride side then 6 weeks radiation finished 4/25. Bad headaches started right around radiation not sure if before but they ordered an MRI and found a small meningioma.right side of brain. Never had a brain scan before. Yyesterday I saw a neurological oncologist. She said it is very small and they will do another scan in July . My headaches are not from the lesion but likely just nothing. I have some facial numbness very slight on same side she said maybe just left over from chemo neuropathy.
All very scary but I am glad they did the scan because now they can watch it as a baseline.
Hope this is not too much info.
Does anyone out there have similar or more info re brain?
Best to all
JK
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Hiya, JK. I'm so very sorry to hear that you are dealing with this. I know trip neg tends metasticize to the brain and lungs first but that's about all I know. I also know radiation can be REALLY effective. Praying for long term remission for you.
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Hi there. Glad everyone is doing well. 0 -
Hi cajunqueen, you are very impressive. I appreciate hearing from you and really think that you handle everything so well.
For friends with neuropathy, I have had great help using B-6 and s B complex plus I took l-glutamine during chemo. Now post chemo I am taking B-6 as soon as I feel tingles shooting pains hands and feet and numbness especially at night when I Tske B-6 it stops right away. If I don't take it I feel the tingle etc coming on it seems to work fast
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cf, thanks but sooooooooo not true. I was a MESS after dx. My twins were 2, my son 1, and the thought of leaving them motherless made me panic. The guilt was overwhelming. But God is faithful and I have come to realize that His grace is sufficient for me. Even though I feel like crap a lot, my life is so much better now!
Is it possible that the brain tumor is benign or operable? I know if the cancer has only spread to one place, sometimes curative surgery is still possible! We all have circulating tumor cells, but if they can get the lesion out, it could be 20 years before another tumor forms.
Grey!!!! How are you, my dear? 😘
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grey, is that really you?! Hoping you are doing well (((hugs)))
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I mostly just lurk and read these days....chemo is in the back of my mind not the front (well other than the hair still not being what it was before..)...but Grey! So good to see your post! Hope you are doing well. Sending hugs.
Octogirl
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I have pretty much stayed away but have peeked in the window a couple times. I am doing ok- life has been tough but so far I have survived. Chemo was a nightmare for me and was stopped early because of side effects and research that chemo may not offer enough benefit for a strongly ER+ BC. Now I stand on a cliff because I need to make a major decision. I hope you can help. Radiation vs bilateral mastectomy and reconstruction. LCIS was found and after 8 hospitalizations and numerous arguments with my MO, I need to figure out my next steps. My hair is coming back in slowly. The BS and MO are thinking it is overkill- their thought is that I may never have a recurrence but the massive IDC/DCIS/Lcis -10 cm lumpectomy wasn't seen on mammography- it was supposed to be 5mm! I feel I have to do something definitive. What do you think? Will do the Diep reconstruction.
How are you, tessu?
How are you, octogirl?
How are you Cajungirl? Cyber knife has helped a daughter of friend with her brain tumor and my mom was diagnosed with a benign brain lesion after she was diagnosed. Never became a problem. But I do wish you the best.
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Hi Greyt,
Not sure about your situation I could major conflicting opinions about mastectomy. My NY surgeon and MO wanted me to have mastectomy. My daughter took me for s second opinion at U of Michigan, there my breast surgeon who trained at MD Anderson and is young and beautiful and really smart sat me down and explained why she would not do a Mastectomy for me she just refused said it would not improve my mortality. However it may decrease likelihood of recurrence. I went with her approach breast conservation on January 27 I am really healed beautifully both NY and MI agreed that I needed maximum radiation to my right breast. The lumpectomy on left side was benign. I had positive lymph nodes to start she took out 8 axillary node. I did not have much shrinkage from the taxol and AC. My borders were clear but close.
Finished Radiation April 25
So now I am trying to decide with next treatment to reduce risk recurrance. I am triple negative so no anti hormone therapy.
Looks like I will start Xeloda and maybe carboplatin. Not sure my Mo will let me know next week.
Considering a vaccine trial
However no data yet that gives confidence
The trials are Neuvax
Another new one folic acid receptor EGF not sure name
Anyone out there part of a trial for a vaccine
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I had a lumpectomy June, 2015. It has healed up completely. I still feel like there is something wrong but every one ignores me. They say it could be scar tissue. My bs from the lumpectomy is going to my surgeon for the mastectomy. She thinks that I should just move on to radiation but I am not convinced that there is nothing wrong with my other breast. The mammography did not pick up the extent of the bc in my left breast so I am not ready to trust it again. The Pet Scan I took had a highlight for my left breast and a couple of other areas that the MO said were nothing. I don't really understand Pet Scans and they frighten me to death. I almost had a stroke the first time they did the Pet Scan and they want another- I can't do it. I'm even having a hard time with the CT Scan for the simulation - that is why the radiation people say- surgery and the surgery people say radiation! I am not that worried about mortality. There is no difference they say- I am more concerned about recurrence- I can't go through the chemo hell I went through again this year. I told my doctors that I would commit suicide ( told them exactly how and the calculation of lethality) if I EVER became stage IV. They were not happy and wanted to refer me to counseling but I assured them I was in my right mind, all contingencies had been taken care of (my cremation has been prepaid, my dog will be sent back a rescue agency and my will has been notarized). My MO gave me a prognosis of 2 years or less if I became stage IV and I won't go for suffering. So I really need to prevent recurrence. I am glad that everything has worked out for you. I couldn't complete all of my chemo because of side effects and the radiation people are concerned about my PTSD ( being severely burned by a family member) that I might not be able to survive the radiation therapy. The length of surgery concerns me and my 1 positive node ( micromet) makes me think I should do both the radiation and mastectomy. So confused!0 -
hi Greyt,
I agree with you about this situation. Nothing is really clear and the choices are confusing. I hated my Pet scan I had vision trouble after a bad floater the eye doctor says I have macula puckering.. MRI are really so noisy and uncomfortable too but these are the tests they need. My pet had spots that were uncertain too. Now I will have an MRI every 3 months to watch a small area on my brain. This whole cancer thing is just a life changing adventure into ache pains and confusion.
I really wish they had more clearinformation and more clear choices too.
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Agreed! We know so much about cancer and yet so little in the end.
I can only share my experience. Both the msx and radiation were easy. I had whole breast rads + lymph nodes ×33. I had a bmx, SND and AND. No problems other than some tightness on the radiated side. If I had to pick, I would have the surgery. I'm not all that convinced that rads are that safe or useful. But I went to an implant and tissue expander, so the surgery was only 4.5 hours. I am highly ER+ too (99%) but the highly aggressive form - luminal B.
The hysterectomy and chemo were hard. The Taxol tried to kill me. The clinical trial landed me in the ER. I am medicated to the max. But other than fatigue, I feel great! I feel closer to Christ and my children. I am motivated to spread the good news and share my story. I am at peace with the "38% chance" that the cancer will return.
Praying you find peace in your decision, grey.
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I also personally think cancer doesn't survive all this treatment to simply move forward in a year. I think it was already there and they couldn't catch it yet. In my mind, the writing is already on the wall. I had a clean PET scan after surgery but that doesn't mean much to me. I had clean margins but extranodal extension. It's either in my bones or liver or not. Or I suppose there could,be some stem cells leftover that are dormant but would come back with a vengeance. I tend to think once the tumor has formed there is not a whole lot you can do except make a few healthy changes and go on living!!! Tomorrow is promised to no one.
Hugs to you all!!!
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grey is there any way you could do the rads first, and then consider reconstruction later, after the tissue has completely healed from the radiation? I'm sorry to hear you've had so many problems with treatment (((hugs)))
I was angry for a long time that my surgeon only removed the cancer breast, until I read several places that BMX doesn't improve mortality. Also, as my prognosis is not so good (oncologist repeatedly uses the words "WHEN you get mets" instead of "IF you get mets") I've decided I don't want to waste the time I do have left recovering from more body-chopping. I cannot trust mammography, which was normal when I had the lump; or ultrasound, which only showed that one lump. MRI showed two additional leesions, one turned out to be a large very aggressive DCIS, the other normal tissue. Best screening for me would be repeated MRIs, but that is not available here for screening, only pre-op
I refused immediate reconstruction because the only possible kind would have been the multiple surgery expander-then-implant type (I don't have enough spare tissue) so am a "uni-boober" at the moment. There is some kind of chest wall nerve damage, my scar and chest wall hurt, especially since I finally started the stretching exercises I'm supposed to have been doing all along. So more and more I go around without the bra prosthesis because the weight against my chest --- even from the fluff-filled one --- hurts, and I don't owe it to anyone to suffer even more just so their eyes aren't offended. Sometimes people give strange looks, but I haven't been arrested yet 
I have chronic inflammation on my large toenails from chemo, and Herceptin is apparently weakening my heart (getting another study end of this month). Have also had nausea and loose stools for over three weeks, no idea what from; when I asked the Infusion Clinic nurses they just said "oh" so I guess it's not worth bothering the docs about Luckily I have learned how to pretty much control the lymphedema and its associated pain (night wraps twice a week, compression sleeve/glove days), which is a great relief. More and more of the time I CAN keep a positive attitude, but I still battle dark thoughts more often than I would like, despite therapy for the anxiety. Husband has been unsupportive-bordering-on-a$hole for this whole journey. Luckily I've found valuable support here, on the Finnish patient forums, and lately also from the local bc group. The one-year "anniversary" of the day I found my bc lump is less than three weeks away; I will probably be a basket case. Oh well. At least I still have my dear, sweet, elderly dog 
Wishing everybody an easy week
(edited to correct massive amount of typos
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