Chemo Starting September 2018
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JNKK - I hope the rest of the trip is better than that!
Beeline - we make similar jokes here. And I've claimed chemo brain on a number of occasions when I've done something forgetful. So glad to hear the taxol is easier so far. When is your last one?
Fairchild - being PFC, even with the side effects, is a relief. But I hope they pass quickly for you and your able to really enjoy your kids' visit
KK- bruised finger tips - that sounds really unpleasant. Could the mouth sore be chemo-related? Mine turned out to be thrush, which I got with every round, and I was prescribed diflucan each time. There is no justice to the hairloss pattern. I finally got some stubble on my legs but still baby bird hair on my head. My older son, who hadn't seen me since the day after I started chemo asked to see my bald head last night, he burst out laughing when I showed him. -_-
Brink - that's good to hear your neuropathy is easing up and you're able to come off the gabapentin.
I hope everyone is able to enjoy the holidays. I think this F'ing cancer has made me aware that there are no guarantees, and I'm really trying to focus on being grateful for right now
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Ladies, I hope you all had an enjoyable Christmas.
I found myself in the ER Christmas Eve with chest pain. In the 12 hours I was there, I learned that yes, my heart is damaged from chemo, but I was not in active cardiac distress. As I was hearing the discharge instructions at 1:30am Christmas morning, the Dr. told me that the Chest CT revealed "a new spot on my spine related to cancer". I asked about it briefly but really just wanted to get the f#@! out of there.
So I sent MO a message asking him to look at the CT scan, and he came back with the impression that it is bone mets, but it responded perfectly to chemo. "Sometimes a very small amount of cancer in the bone can be impossible to see (nothing was seen on your CT scan from July) but as the cancer cells die we can see your bone healing (the current sclerotic lesion.)"
Typically a biopsy is ordered but he is suggesting we skip it since it appears the chemo has killed the cancer cells and would be non-diagnostic. I will have a full body CT scan to see if there were any other sites missed in July that have "healed". Assuming only dead spots are found, I will continue with the current plan of radiation and anti-estrogen therapy with the knowledge of bone mets, so always on the lookout.
My mom was in the ER with me but it happened so quickly, she didn't catch it. I may have several good years before it comes back so I don't want to share this outside of my extremely close circle, but I don't know how. How do I tell my mother that she will likely outlive me? Family members have asked how I'm doing since the ER visit, and while I want to yell "It fucking sucked!", I smile and say it was a false alarm. This is a very lonely disease.
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Oh Piksie, I am so sorry to hear this. That is about the worst Christmas present ever. I would say definitely don’t write yourself off yet. I do far too much lurking on the stage IV boards so have read lots of hopeful stories of women living full lives a decade + on, especially with bone mets. It also must be a good sign that it responded to chemo. I wonder if it’s worth a second opinion depending on the outcome of the full CT? I am thinking of you and sending lots of love and virtual hugs from the other side of the world. You may feel alone but there are lots of us here who care about you.
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piksie - I’m so sorry - that’s such scary news to get and even though the cancer cells in your spine are dead, it’s hardly a false alarm. I hope the full scan brings some clarity. Holding you in my heart!
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Today was supposed to be my last chemo, but at my last MO appt, she cancelled it. My treatment has been full of complications. Originally was supposed to be 4 A/C and 4 Taxol. I reacted violently to Round 2 Taxol (passed out, needed O2, no bp, altered for 2 hours). So Taxol was stopped and they said I would finish with 2 extra A/C. They did an ultrasound on my heart to compare to pre chemo ultrasound and it shows damage to my heart. Now having a CT, another ultrasound and referral to cardiologist next week. I almost broke down crying in the office (but didn't) when she told me all this. Concerned I didn't get all the chemo needed. Concerned about my heart. I am super fatiqued and my SATs are low (90-91) and my bones ache. We all know where our minds go when our bones ache. I see RO on Jan 2 and start 6 weeks of radiation. Bright side, I suppose, is chemo is over, and hair will come back. One thing I have really learned is plans change and as a cancer patient, we are in control of nothing.
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dammit piksie, that sucks. I concur with beeline, and I also spend a lot of time on the stage 4 boards since it feels like an inevitability for us stage 3 women. Bone mets are the "good ones" and women are often NED for long periods of time when they have responded to treatment as yours seemed to have. And the science is getting better every day. It’s a shitty lot to have drawn. Give yourself a few days to have a good wallow and then try to shake it off. You are young and strong. Sending hugs from across the country.
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Dear Piksie - I’m so sorry for your terrible Christmas. I hope and pray that the chemo has got them all.
On sharing with your mother, it can help to have a person talk to her separately to gauge how she would react to the news. Then little by little let her know this can be a real possibility. It will be difficult for her, but if she is already emotionally prepped, she will be a better support foryou.
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Piksie: sending you a virtual hug. I'm sorry to hear about this. Did they ever do a bone scan before u started treatment? My doctor told me bone mets usually dont come out on CT scans? Try not to jump to conclusions. I know it's hard not to but our minds are very powerful and we must learn to reverse those thoughts with positive ones. I completely agree with you about how lonely this disease is. Nobody gets it.
Elizabeth: sorry to hear about your reaction to chemo. I know your fears too. I have one more treatment and my doctor had to reduce my dosage by 20% for taxo and 10% for carbo due to side effects and of course my mind wonders if it will be enough. But you did what you could and that's what matters.
I had my consult with surgeon and she recommended I only get UMX but I want to do BMx. She is not opposed but says umx will allow me time to heal and then for reconstructive surgery can help with skin etx but part of me just wants to do the BMx and be done with it. Ugh. So much to decide. I will have all lymph nodes removed on right affected breast and on left she offered a sentinel LN biopsy. So many things to consider.
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I am sorry for being a lurker not a writer recently! Sometimes putting things on the screen is just a bit hard. I have been reading and praying and remembering all of you though, especially Piksie this last week - I hope you've felt the vibes!
My treatment journey is continuing, though chemo will be finished after only have four more weekly taxols. I will NOT be sorry! I will actually miss the staff at my centre, but not enough to wish I could continue. I actually had a holiday from treatment as my chemo cough had exhausted me, so the infusion due on Christmas Eve was postponed. I was grateful for that, as I did only just cope with a very busy Christmas celebration at my house. I did "send myself to my room" for a short rest when I realised that I was simmering and might misbehave. But what a wonderful day! We had just on 40 people through the day, most for lunch, and it was a joy to see so many family as well as the odd extra.
I suspect our Christmas lunch was rather un-American. Fresh local prawns and oysters, chicken cooked on the grill, a whole ocean trout, lots of delicious salads, followed by desserts!! Pavlova, raw beetroot cake, Brazilian version of creme caramel +++ Gift giving and a swim between main and desserts. All at a long table under the wisteria, on a sunny 82degree (28C) day. And then another swim. It's taken a few days to recover though, as you'll all understand.
And now to 2019 - I wish you all a healthy and peaceful year full of good news and no fear. And enough patience for the other times.
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Piksie - I am so sorry to hear the news, but I am with beeline and KK!! I know two women with IBC beat the odds and 20+ years, they are still here. I know what they had is different from what you have, but we all know that IBC is more difficult to cure; however, they are still here today. Perhaps a second opinion will give you more clarity? And let's not forget that the bone mets is responding to chemo! Please don’t give up on hope
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Elizabeth - I can see why it worries you to stop chemo early, but it's always an issue of balancing risks and possible benefits. Seems like it's most important to make sure they don't ruin your heart. You are so right that we are in control of nothing.I hope you are able to rest up and heal some before the rads start.
Sunocean - Why would they do a SNB on the unaffected breast? I had a BMX with cancer only on the left and the surgeon just did the SNB on the left side. Seems like the more nodes you remove, the greater the risk of lymphedema. But maybe she has some reason for offering? It is indeed a tough decision about whether or not to take the non-cancer breast while you're at it. I just wanted to be done, too.
Sue - I think lurking is fine when you aren't in a writing place. It's still a way to stay part of the group. Your Christmas dinner sounds delicious to me - I love seafood of all kinds! I was feeding my son's girlfriend as part of ours and she eats no seafood, so I made game hens instead. So you'll finish up late January?
A patient was telling me that she had some memory/concentration issues from having four surgeries in ten months, totaling 4.5 hours under general anesthesia. I found myself totaling in my head and realized I'd had four surgeries in 6 months, totaling 12.5 hours under anesthesia. Plus chemo! No wonder I can't remember a damn thing! It was a good reminder to go easy on myself when I am forgetful.
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Wanderweg thanks for that. And your game hens sound great. They're not something we see here, but we do have small chickens sometimes, and I roast them with lemon and lots of herbs.
The forgetfulness is ridiculous. I find myself not assuming I'll remember anything, so if I think of something I do it straight away. Any longer than 2 seconds, and it's pretty much gone. Not what I've been used to my whole life, and I do miss having a sharp mind. Hoping ......
Sunocean, you're in a difficult spot working through that decision. I can't help with it, having had a lumpectomy (MX never suggested), but I can share the tool that keeps me sane when I'm making a complicated decision. I write lists - pros and cons, and getting it down on paper stops the endless cycles in my head and often makes the better decison clearer. There is no right and wrong decision for you here, just hthe one you are more comfortable to own. All the best with it!
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SUE thank you for such great advice. Love the list idea. And I've been doing that in my head but writing it down makes sense.
WANDERWEG when I met with the radiation oncologist she said my left lymph nodes in the unaffected breasts were also a bit swollen and she commented that she was surprised both my surgery and and oncologist hadnt recommended a biopsy before starting neoadjuvent chemo. When I mentioned this to both of them they seemed to dismiss her concerns and say they were not suspicious but of course that left my head. So my surgeon offered this for peace of mind but I dont think I should do SNB given my cancer tumor is undetectable now so those on the unaffected breast will probably be too. So why risk lymphedema there. That's what I'm thinking. But definitely an ALND on the affected one.
And I hear everyone about the forgetfulness. It sucks. I'm scared to go back to work lol
Lastly I saw my oncologist today and he confirmed no more chemo. I only did 5 out of the 6 TCHP. Platelets are way too low. I am at a 9 and normal is about 130. So yeah. Sucks. I guess I should be happy I'm done with the taxotere and carbo but I'm not. I wanted all the drugs to kill this but I trust his judgment and like I've said before we do what we can. I will still get the herceptin for the year. Big sigh. this disease does suck and it's so unpredictable.
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Hi girls. Thank you for the kind words. I've been doing alright with the news. My bone scan is Jan 3, and the whole case will be presented to the UCSD tumor board on Jan 7. Assuming no live cancer is found, MO expects concurrence of Stage 4, NED and will continue the current regimen of radiation and anti-estrogen therapy. I asked if I should continue with port removal, and he said yes. Assuming it is MBC and I'm NED, I won't need infusion for years. The life expectancy found online is dreary and outdated. My mentality now is at least 10 years. I plan to outlive my mother who's 70, and I will see my little one through high school, perhaps even college.
I shared with a close confidant and with my ex-husband so far. He's non-emotional, and we have the task of raising our boys, so the choice to share with him wasn't a hard one. I also knew he would not be inclined to feel sorry for me, and of course, he doesn't.
Everyone else will be emotional and shower me with pity, and I just don't need it. I will freak out when I'm no longer NED. Until then, denial is my middle name. Although, it has inspired me to purge. Get rid of things that are taking up space, crowding my closet, etc. If it doesn't bring me joy, it's gone. That should keep me busy for a while.I had a 2D echocardiogram yesterday as a cardiac follow-up. Not sure when I'll get the results, but I hope it's soon. Knowing there is some damage has made me leery of exercise, and that is not okay… weight bearing exercise will be a large part of keeping my bones healthy. As soon as I get the green light, I'm going to resume my previous lifestyle. Boot camps, mountain climbing, Spartan races, etc. In fact, I'm going to kick it up a notch. When you stop living, you start dying.
Enough cliche. I'm off to take my boys indoor rock climbing. A bit of neuropathy will keep me from climbing this time, but I'm confident that it is temporary.
-Sheri
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Piksie, I am very sorry to hear this. But good that it is NED and current regimen will continue. You are so inspirational. I am really looking up to you how you focus on positive and joyous things and also putting your efforts on the exercise. I totally agree with your statement that when we stop living, we start dying. Virtual hugs and strength to you. I have been trying 'pranic healing' recently. It is similar to reiki and helps to heal physically and mentally. You can try it if you feel it might help.
Sunocean, yes these decision making sucks. My surgeon had said UMX does not make sense. If going for invasive surgery (as opposed to lumpectomy), better to remove both and reduce the recurrence chance (though it is not that high). I tried everything - discussion with husband, writing down pros and cons, trying to 'feel' as if I have done lumpectomy vs. mastectomy etc. Nothing gave me clear indications. Ultimately I decided BMX based on my high oncotype and to stay away from fear of 6 monthly mammo. Wishing you the best to make the decision. As Sue said, there is no right or wrong, just individual preference.
Elizabeth, you are so right, we feel so helpless in this situation. Sorry to hear about heart damage. Sending you positive vibes. We can just do what is possible and as Piksie said, can try to 'live' our life as much as possible.
My blood work shows I am anemic and have low thyroid. Doctor said, in the week of surgery once again blood test will be needed to check the levels of these two. Anyone knows after last chemo how much time it takes for red blood cells to be back to normal? Will call my MO too to have her opinion on this. Thyroid numbers could have been affected due to my cough and cold, so doc started me on antibiotics. Thankfully my EKG came normal. Cardiologist suggested to do echo and stress echo. Does everyone going for surgery need these echo tests? I am going to ask my surgeon too. Feels like almost everyday I am meeting some or other doc and God knows what else is awaiting with each test. On positive note, had peaceful and joyous celebration on Christmas at home. Son was happy to get VR as gift. Going to theater to watch spider man movie today.
Wishing Happy and Healthy New Year to all of you!
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piksie - you are absolutely right - you have lots of time left and the NED part is truly good news. And also glad you can get your port out. My MO had originally wanted me to keep mine 6-12 months, but my feeling is that if there isn't an immediate need, I want it gone. I don't want to live as if I'm waiting for more treatment. I actually was going through my closet today and off-loading somethings I don't like all that much. I am planning to do some serious simplifying over the coming year. You have an amazing attitude and I am so impressed with your commitment to healthy living.
BeingPositive - I don't know about RBC, but my MO had told me to wait until four weeks after chemo to have my ankle surgery done. (I waited 27 days - seems close enough). They didn't even do more bloodwork on me, just used the labs from the last chemo.
I went for my first long walk post ankle surgery. My foot is still partially numb but the scar is thoroughly healed and I'm ready to be active again. I'm getting ready to make a big pot of seafood stew and visit with my younger son.
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Piksie, I am very sorry to hear your news and I am praying that you get the best possible news you can from your bone scan. Please know that I will forever keep you in my prayers and that you have a whole bunch of us wishing you well. You have been such an inspiration to me - if you can do a spartan race, I can drag myself to Zumba or the bike or to walk the dog. You have a lot of time left and I have no doubt you will live it to its fullest.
Wanderweg, I'm glad you're on the mend. And Elizabeth and sunocean and everyone else in the same boat, I'm sorry to hear about the complications. I hope you all feel better soon.
Sue, your Christmas dinner sounds delicious. And JNKK I hope you're doing well on the road trip and in New Mexico.
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Thanks wanderweg. I hope numbers will be fine in next couple of weeks. Also trying to focus on right food to help numbers go up. Good to know that you are healing well and getting back on track to be active. Have great time with your son!
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Piksie/Sheri - May radiation and hormonal therapy keep it in check for years to come!
Sunocean - I decided on UMX because I didn’t feel it would make much difference in terms of outcome. Now that I’m home recovering from surgery, I’m all the more glad for my decision. I cannot imagine how you ladies get out of bed after BMX!
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Piksie, I just want to say your cancer has really, really pissed me off. You are one terrific person, clearly, and I hate that this has happened. You and I have several things in common, including being single and raising a boy (only one, in my case, but he has been a handful!). So even from a distance, I think about you and am wishing for the very best for you.
My onc also used a tumor board to determine my treatment. I've always been impressed by the collective expertise of groups like this. And I'm glad that the cancer cells are currently dead as door-nails. Please keep us posted, as you can.
I'm recovering from the last chemo infusion. My adult kids were home for a couple of days for Christmas and they were unbelievably kind. My son fixed various things while here and carried things up and down stairs like a trooper, while my girl fixed Christmas dinner and even my Santa stocking! Unfortunately, I was hit with chemo vomiting on Christmas Day, but my daughter gamely cleaned it up before I could, something I think is beyond the call of duty for an offspring! They watched movies with me and hung out around the house, spending time with me rather than running off with their friends. I felt incredibly loved and told them that. There's no way, I suppose, to make them really understand how much I appreciated that attention at this time, but I really hope they know how I feel. I'm awfully lucky to have such terrific offspring!
I'm scheduled to go back to work in a little over a week and really nervous about it. Nobody from work has seen me since early last fall, and in the interim, I've lost 25 lbs and become hairless, so I don't exactly have my best look these days! I worry about how my colleagues and students will react to the physical changes in my appearance. No to mention the chemo brain. My doctor is telling the university that I won't know whether I have the stamina to teach until I try it, and we are building protections into my return-to-work plan, but still.....I'm pretty wiped out right now, and worried that I'll be too fatigued to manage. But I'm going to make the best effort I can!
Hoping you all have a good New Year!
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Brink - After a BMX, we got out of bed slowly - very slowly!
No, seriously, I'm glad you feel good with your decision and that it was the right one for you. That's what matters most.Fairchild - That's so wonderful to hear about how lovingly your kids took care of you. I was talking with a friend about how one thing this cancer has done was made me aware of the good support in my life. I am back to work full-time now and feel like my strength is gradually returning. Everyone whose been there all along is just used to seeing me in a head scarf, but I'm sure some new clients are a little surprised. No one asks, though. Will you have to continue with the targeted therapy, or are you completely done except for the AI?
Now that the chemo is over I'm obsessing about two things - when I'll have hair again and when I can get this port out! I know those are small concerns compared to getting through treatment!
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wanderweg, Yes, I'm on the targetted therapies...Herceptin and Perjeta, until September. And I still need another surgery for replacing the TEs, dang them, and generally making them look better. I'm sort of surprised by how awful they look...one is drifting East, whereas the other one symmetrical but not exactly healthy looking. They both look much worse than the pictures she showed me. I keep wondering if this TE process is going to be worth the hassle in the end, you know? And then there's a Phase 3 drug, but I don't know anything about that one. I'll just be glad to get to Phase 3, you know?
I've had the same experience of finding out that people are far nicer than I usually give them credit for. For example, my department brought us full meals for 6 weeks after I had the BMX. And they stayed to visit when I got well enough, which was really nice. In fact, people have stepped up to support me, folks that I never thought would. I'm re-thinking all of my assumptions about people, which have been kind of jaded, I'm realizing. I don't think I'll ever view the world in the same way again!
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Happy New Year friends! We’ve had a couple of lovely summer days but today we’re hiding out from the sun, doing some baking, waiting to see what else strikes my daughters’ fancy. I had Taxol #4 the morning of New Year’s Eve so it was not a wild night — not that it would have been anyway!
I am definitely having some neuropathy and after T#3 had the worst all over body aches and pains, like I had been hit by a truck. Way worse than neulasta. I was glad I had read here about the pain syndrome though sorry it meant you had to experience it Piksie! So now I have some stronger pain meds should it hit again (tomorrow, if it keeps to the pattern).
My hair has started growing back! Not a lot and mostly gray and white, but somehow this little sign of regrowth makes me feel so hopeful, like I can imagine a day when this is all behind me. Before I get there I’ll have to decide about a clinical trial I’ve been offered. I’ll come back and ask the group when I’m ready to think more about it, as id really like to hear what you all would do/recommend.
In the meantime, sending wishes for a happy but especially healthy 2019! Lots of love from NZ.
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Fairchild, my TEs looked pretty crazy. Different sizes and one going off in a weird direction. But the implants are much more symmetrical. I think all they care about with the TEs is stretching out the skin, so there's no effort to make them look even.
beeline - Sorry about the neuropathy and pain. I hope the stronger meds help. My hair is also coming in very pale. So far, it's just fuzz but I keep telling myself it's a start. We saw a rescued vulture at the nature center yesterday and I realized with a shock that she and I have the same hair.
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Taxol number 9 done. I feel like I’m truly in the home stretch of this phase. Today and tomorrow I will ride the steroid high and then the weekend is my crash, which is relatively mild, more of a feeling of being deflated, achey and yucky mouth. My fingernails are multi-colored but the pain in them seems to have leveled out. I don’t notice any other numbness in my hands or feet. My hair is definitely growing too. The old stuff that never fell out is light brown and NOT growing and noticeably thicker/bristle-y than the new stuff that is growing in thin and blonde all around it. I will give it a few weeks but I think I might need the equivalent of a high and tight to even out the sides with with the top? I just dread looking like Gollum 😫. I have about 4 eyelashes and enough brows to use as a pencil template. It takes a lot of makeup and positive affirmations to get ready and walk out the door lately.
Sending out strength to everyone still in treatment and happy hair growth to everyone who is done! If anyone has started rads do drop in here and let us know how it is going!
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KK you made me laugh! I’ve also never worn as much makeup in my life as I do now. I’ve also had Taxol #9 yesterday. Hair fluff is growing, but I think the last lashes have gone (they kept falling into my eyes, so a relief really).
But from today tre eyebrow pencil is no more! I’ve had eyebrows tattooed on (microblading). They look pretty good, too. I feel I need to be well groomed as I’ve taken to going topless in our hot summer weather. After all, I don’t see bald blokes wearing beanies in these temperatures.
Beeline my reactions have also varied a lot between Taxol infusions. Neuropathy comes and goes, as do aching joints. And after 12 weeks I’ve finally got the cough under control.
Rads next for me, too. Another new adventure.
Health and energy to enjoy life to everyone
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I start Rads Jan 14 for 3 weeks. Next week will be all the prep...the tattoos, the appointments etc. Hoping to be through it all by early Feb. I can then begin the climb out of the fog and back into health and energy.
Re makeup--so funny, every time I put on makeup, my husband, who never notices anything, says, " Your colour looks good today" makes me laugh.
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Hi all, just saying hello. And enjoying the make up talk! I have not used a blow dryer in almost 6 months BUT my make up routine has tripled in time as you all mention. I wear makeup to yoga! Even though the eyebrow pencil wears off (I hate the feel of the gel).
Elizabeth and Sue, I rang the radiation bell today. The prep is not bad, and the tattoos don't hurt for more than a second. I found radiation more disruptive for my work schedule than chemo, but I felt better. At the moment I am realizing I have to work a full day tomorrow (from home) and that's making me unhappy. Sitting and focusing is hard. But I'm hoping it gets easier soon.
Hair obsession continues. I can go out in public with no hat (hooray) but don't look too close. And, I think my part is going to be on the opposite side because I lost a lot more hair on one side as opposed to the other.
Fairchild, good luck with going back to work! I bet (and hope) people will be super nice. That's my experience too. I also got a lot of talks from the doctors and nurses the last few days, now that I'm past chemo and radiation, about how it will take me a while to be back to normal and to be assertive about that. Folks may assume since I'm done with active treatment, I'm back to normal and that's not the case. I know that and expected it, but the better you look, the more I think folks think you're the same. And of course, you'll never be the same, but hopefully you can get the stamina back.
Stay healthy.....
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Sue - how are your microbladed eyebrows? Did you ask your medical team or just go for it? Like tigerlilly my make up routine has tripled (I used to wear none or almost none) and am so tired of drawing my eyebrows on everyday. Plus they look wonky in a new way every time I do it.
Fairchild, good luck going back to work! I start my new job on the 14th and am trying to decide if I’ll have enough coverage to ditch the wig it is summer here and that plus the hot flashes have me desperately wanting to yank it off half the time anyway.
KK - glad you are keeping on have you thought any more about clinical trials?
Tigerlilly - congrats on ringing the rads bell! I don’t even start until April. Feels so far away.
Elizabeth 9 - good luck starting rads!
Take care everyone x
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KK - It's really interesting to me the difference in hair loss/regrowth that everyone reports. I have only peachfuzz on my head and no body hair to speak of, but never really lost my eyebrows or eyelashes (they're both a little thinner).
Elizabeth - I've started wearing eyeshadow and mascara everyday to work so I don't look quite as washed out. And now people tell me I look like I'm feeling better. :-) Hope the rads aren't too hard on you!
Tigerlily - Yay on the rads bell!!! And I hear it's many months before you start feeling "normal" again. I have times when I feel pretty good and other times when I just feel run down and foggy-brained.
beeline - Since it's a new job, why not just start wigless? Especially given that it's summer where you are (jealous!) AND you have hot flashes. I'm looking forward to having enough hair that it looks like a buzzcut, and then I'm getting rid of the scarves and caps.
My husband is having a colonoscopy Monday and you know what my overriding thought on that is? That I'm thrilled that I'll be the one waiting in the waiting room for a change!
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