Chemo Starting August 2018
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SB! I’m soooo happy to hear that you have rediscovered this old flame! Cheers to love and to LIFE!
it’s just so amazing to hear the positivity and normalcy flowing in this group.
MGJ, are you a fellow Flattie now?
Loving everyone’s hair updates. Mine is a disaster of tight curls, it’s just growing puffier!! So grateful to have it back!
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kWilli—yup! Totally flat! I rather love it! Very androgynous with my hair in a hat and a boy body!
Wanderweg—your hair looks awesome! Thanks for the seaweed tip. I stocked up at Whole Foods. When you you say ‘sheet’—what size is that? The seaweed I bought is 2 inches by 3 inches so I just cram a few in my mouth. My best friends fav potato chips are Nori Lays (Nori/seaweed). She then turned me onto them. I can only find them in Asia. But, they’re tasty. I guess I could eat a bag a day and say it’s to decrease my estrogen.
MACTAZ—thanks for the anniversary congratulations! A better year for sure!
My drain was pulled yesterday. I see BS again on Monday for another check-up. Then I’m done-done. No more surgery, no new meds, nada. My husband told me I look like a new person. Like I literally, lightened up. I guess this last year has taken a toll and made me look sad or tense or something. I totally understand why I would look uptight (no shit!) This year has sucked but I’m relieved to know I’m looking less disgruntled. My mom always told me—It is always better to look good than feel good. 😉
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MGJ Wasn't that the "Fernando's Hideaway" credo (Billy Crystal on SNL)? I am so glad you are happy with your outcome and that you will have some post surgery summertime to enjoy being done with this cancer shitshow!
Quite astonishing to find myself in this romance. As I said to one of my friends, "did he not read my carfax?!".... but he did, and he's here, and that's pretty cool. I feel like the intervening 10 years has changed both of us in subtle ways that make the connection better. He's more certain of wanting to be coupled, more able to verbalize feelings and hopes, and I am more able to read non-verbal communications, so between those two shifts it feels much different and more intimate than before, and more fun.
Sending hugs to all!
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MGJ - I kept forgetting to pull those out and measure them. I buy the sheets that you use for making sushi rolls, and there about 7 1/2” x 9”. But occasionally I buy the Trader Joe’s seaweed snacks with you much smaller sheets and eat several of those. So glad you’re done!
SB - I’m so excited for you about the new romance! He sounds like a truly good guy.
I saw my BS last week and she walked and and said, “Wow, you look great! I mean really great - like you’re glowing!” Funny how getting surgeries and chemo behind you can make you look human again! We are moving to yearly checkups. She said I didn’t have to and could be followed by my oncologist, but she does a very thorough check for signs of local recurrence and I want that. Plus, I adore her.
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SB—Yes, Billy Crystal. With that funky accent. I was raised on SNL. The old stuff cracks me up. I’m so happy that the cancer shitshow hasn’t ruined a relationship but created a new beautiful one.
Wanderweg—thank you for the seaweed dimensions! I’m still crunching it down. What a nice compliment from your BS. I guess they see us all jacked up and stressed from our diagnosis and later realize how different we look when it’s behind us.
I see the BS tomorrow. I’m sure he will tap my seroma. I’m still fairly boggy. I’ve not exercised (as to not make it worse) and it’s been a long week without hiking. I miss it.
Happy Sunday!
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Chemo sisters, glad to hear everyone is doing well. MGJ, I hope all goes well at your appointment tomorrow and you will be able to get back to your hikes. WW, it is nice to hear compliments on our appearance. I went back and looked at some old pics, OMG, I looked awful.
I am trying to stay positive but it just seems never ending. I keep telling myself I’m so close, but will admit some days are hard. Tuesday will be surgery number 3, just some readjustments to my Foob and I decided to go ahead and get a fipple:). My brain scan came out clean, good news, and my dexascan has mixed results. Had bone loss in my spine but the hips either gained bone or had slight loss. I will stay on Fosomax for at least 2 more years so hopefully it will help. I have two more infusions and then I should be done, only having to get my port out. I’m really ready for this to be done with. It will be one year of treatments when I have my last infusion in August, I can’t imagine those you have had to do this for longer, it does wear on your nerves.
All take care and so happy you all are doing well.
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MACTAZ you re nearly there. We can all celebrate our one year mark together!
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Had my annual Mammo today: perfect !! So happy - I wanted to share.
xox SB
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Good for you SB, so happy for you.
Surgery went well yesterday, a little sore but all the excess skin is now gone. I’m feeling much more energized, didn’t realize how spooked I was but so excited to be closing in on that finish line.
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So glad the surgery went well MACTAZ! The end is in sight!!
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Hi Everyone,
Just stopped in and was happy to see most of you still here. I stopped coming for a while... needed to make my iPad a cancer free zone for a bit.
I just came back from getting my 1 year mammogram. IT WAS CLEAN! No new breast issues identified. I’ve still got the bone Mets in my spine, and I’m told a newer one in my hip, but no more breast surgery for me 😁.
Mactaz I’m glad your latest surgery went well! Santabar- a romance! Really wonderful to find out you have a new beau.
All the best healto you all!
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Kelly-Anne, happy to hear from you and that you got a clean mammo. I have to admit I’m not sure what bone Mets are but am going to look it up, wish you the best.
My one year mammo was delayed because I have to wait 6 months after my reconstruction so I will see what happens in November.
Life has been really good the last several days
, my OC gave me a 3 week vacation from taking my AI, and it is amazing how clear my mind is, I didn’t realize how much that stuff was impacting my ability to think and affecting my moods (although DH was getting the brunt of it). Not sure what OC will want me to do next.
I’m getting really excited to be done, next week is my consultation for my tattoo, never thought I’d get a tattoo. Then the following week is my last infusion, and except for a few loose threads I WILL BE DONE!!!!!!!!
Going on a girls vaca late August and looking forward to that, hair is growing back, fingernails are a mess but who cares. Just think gals, one year ago we all started this journey together. I appreciate you all and hope we all continue down the happy life path.
Take care. HUGS TO ALL.
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Kelly Anne, it's great to hear from you. I am happy your mammogram was clear... that's a very good feeling. Are you in any pain in your spine? I hope not. Are you on a tamoxifen or similar for the ER+?
MACTAZ, so incredible that 12 months ago we were all getting diagnosed, getting ports put in, finding out abut Claritin etc... It is surreal.
I think we need to have a virtual party in August. Sending hugs to all!
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hey there all! I just popped in to hear how MACTAZ’s surgery went! I’m happy to hear that it went well and hope you’re going to post a pic of your tattoo when it’s finished (we’ve shared so much, what’s a pic of a fipple among friends, right?!).
SantaB; mammo must have been tough, I’m glad it’s all good.
Kelly-Anne - it’s really amazing to hear from you. What a relief to have a clean mammo; although, it must have been tough. Do you take any meds for the bone Mets? What do they do, just monitor for changes? How often?
I had to hit up the doc today to check on a lump in my armpit (opposite side to original bc side). A loooooong time ago it was biopsied and I was told it was a lipoma (fatty tissue overgrowth, gross); however, it started to grow recently so I thought it best to check. I’m freaking out because tnbc is such an animal, at the same time thinking it can’t possibly be something again so soon, right?
Waiting. Again.
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KWilli,
That sounds like a major fright. I empathize so much. I am very glad you have had it checked quickly. I hope that they get you your results asap, so you can breathe, and I hope this is something benign and easy to deal with!
SB
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KiWilli, thanks for your thoughts, I'll think about the pic
. I'm keeping all fingers and toes, even eyes crossed that you will get good news.I know there are several tnbc ladies and this site, I think about you all often and hope for nothing but the best.
SB, I think it would be grand to have a virtual party for us Aug ladies, and as I've stated before I'm always up to meeting some gals at a convenient location for all. It would be nice to meet in person the people that helped me through this. If anyone is game, you can post and we can see who would be interested, try to figure out a convenient location, maybe a major hub city, and timing.....I'm just saying.
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Sisters, we are here! It is AUGUST.
One year ago we were gathering info on Claritin and Zoftan, quaking in our boots and worrying about losing our hair.... and here we are a year later. WOW.
I am still enjoying my 'new' relationship... it's very comfortable. He's sweet and extremely supportive... down to low carb eating, early bedtimes, and all my other health routines and quirks. It feels very loving of him, to be so accommodating. Very kind.
I am considering doing some of the off-label drug approaches to eradicating stem cells. Has anyone been on the FenBen thread or the "How to Starve Cancer" thread? These ideas really interest me. A clinical trial regarding preventing recurrences caught my eye.
I go to my 6-months-post-treatment appointment today and will be asking my MO about those things. Something in my just wants to be proactive at this juncture rather than wait for another shoe to drop.
How are the rest of you guys doing? I send everyone a big hug.
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PS Kwilli how is that lump?
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one year! Wow! What a different August this year will bring.
SB; thank you for updating us. I couldn’t be happier for you and am so very excited for your journey.
My news is good! I have a subcutaneous lipoma (a benign tumour made up of fatty tissue). I was offered surgery to remove it; but I said “No way!”.
I hope everyone else is well. Much love!
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So great to hear from you all, I’m sitting in the infusion center getting my last H&P infusion. I can’t believe it’s been a year but I’m finally done. Hooray. I’m feeling good and can’t wait for my girls Florida vacation in 3 weeks, I’m going to have fun and make up for this last year. Not much left, port out the first week of September and my tattoo mid-December. Still battling the Arimidex but working through it
SB, so glad you are enjoying yourself and things are working out. I will take a look at the site you mentioned.
KiWilli, happy for your good news.
Hugs to you all.
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Yay KWilli!!! That's a relief!
My WBC are low-ish after being higher. Any ideas about rebuilding WBCs?
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Santabarbarian - Hard to believe it’s been about a year. I well remember how terrified I was. But we all got through it in spite of our worries
We’re taking a vacation the first week of September and I just realized we’ll be arriving in Reykjavík on the 31st, the one year anniversary of my first day of chemo!
KWili - Good news on the lipoma!
MACTAZ - yay on your last infusion! I was sooo happy to get my port out.
I saw my PS today for a one-year follow-up from my exchange surgery. I’m trying to make a decision if I want to do a revision or live with the fake boobs as is. There’s a huge dent on one side. It would be a matter of reinforcing the inframammary fold to better support them, because they’re dropping. No fat grafting this time. I’m nit rushing to anything, but I am considering it.
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wanderweg, sounds like a fabulous trip. I will say that I’m so happy now with the look of my Foob after he reduced the pocket and removed excess skin, it’s pretty darn close to my natural breas. I wish you all the best no matter your decision.
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wanderweg what a good anniversary gift. A much better foreign land to be visiting!!
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Hi friends! This summer has flown by. I can’t believe it’s been a year since chemo. My breast surgeon gave me an Rx for prosthetic boobs when I went to see him for a follow up but the prosthetic center lady wouldn’t see me as I was 3 weeks out from surgery and said the pain would be awful. Really!?! I had no pain but oh well. No prosthetics for me. I’m not going back to that hospital just for a padded bra. Screw it. I’ve got better stuff to do.
I bleached my hair platinum so a lot of the curl was relaxed out of it. I had tight curls and now it’s more wavy so it’s easier to deal with. It’s still a pixie. I think chemo must have fried my eyes as the picture I showed the hairstylist was a medium blonde (in my opinion) but I’m certainly platinum. My husband says he likes waking up next to Billy Idol.
There is a tattoo artist on Instagram I follow her handle is ‘Shaughnessy’. Her nipples are out of this world 3-D insane. Even if you don’t have nipples. If anyone is getting tattooed she might be the one to see.
Hi Kelly-Anne! Sorry about the bone mets but happy the breast scans were clear.
Santabarbarian—did you decide on any treatment for knocking out those stem cells? Glad the romance is still hot with your beau.
Take care, you beauties! Glad to be on the other side of this shitshow.
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Santabarbarian—to raise my WBCs I used Astragalus Supreme from Amazon. It has ligustrum berry in it. My WBCs went from 2 to 11. I think I overshot it a tad 🤣 and that was in 10 days.
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I am going to try that!! Thank you MGJ!!
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Hey all, good to hear how everyone is doing.
KellyAnne - Are you getting treatment specifically for the bone mets?
I've got a call in to my MO - while we were at my MIL's funeral this past weekend, I developed a pain under the cancer side breast. I can't tell if it's a pain in my rib or the intercostal muscles. I didn't do anything to strain it that I'm aware of. But it hasn't gone away and I also feel like I bruised my tail bone (and that's been going on for a few months). I feel like I should get that checked out, but I'm waiting to hear what the oncologist thinks. I hate that every time I have a weird symptom, I automatically think cancer.
On another thread someone mentioned a protocol being used in England that is a cocktail of relatively simple drugs. Metformin, was one. I can't re-find the thread, though, so I can't do any research on it. Anyone know about that?
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Yes, I've been reading the thread. Its the COC protocol, aka the McClelland protocol (her book is "How To Starve Cancer" and it is very good... Metformin, mebendazole, doxycycline, and I think #4 is a statin.
I discussed it w my MO. He was against my doing it as both mebendazole and doxycycline have possible side effects used long term. But his recommendation might change if there were more concern for my situation. It's a matter of what risk vs what benefit. I am going to discuss w the integrative MO i had a consult with.
I am doing the (mostly) OTC version of the protocol. I take metformin (have done so since early chemo). I take a bunch of the supplements that have anti-cancer activity too... Curcumin Quercetin, Baby Aspirin, EGCG, melatonin, Ashwaganda, etc. So you can attack the three feeding pathways of cancer with OTC drugs or nutritional supplements as well. She goes over them in the book.
Wanderweg, my MO said if theres anything different that lasts more than 2 weeks, LMK. Good you are being attentive and on it! Hopefully it's nothing.... but like you I would err on the side of caution. Better to check and be fast on the draw in case. Keep us posted!! And sorry for your loss of your MIL.
So far my only funky thing has been from rads... I have an area of skin which is irritable. Went to pool, it got a little light on it, and got itchy, a little swollen, and pink. No issue on unradiated skin -- irritation stopped right at the line of where the rads stopped. Apparently this can happen forever?? Oh well.
Otherwise life is good w me, still enjoying my new relationship, feeling mostly really good but I crash out at 9:30 pm which I did not used to do. I really seem to need and crave sleep more than before.
One last thing I am doing is "intermittent fasting" and it has become really easy for me. I eat between noon and 8-9 pm. And not outside that window. It's great for blood sugar and letting the GI tract rest and mimics some of the benefits of fasting. Inside the wondow I am not eating crap but I also eat whatever healthy things appeal to me including more carbs than before (fruit, lentils, etc).
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Thanks, Santabarbarian, I will look for that book. I suspect my MO will be against it. But if things get dire, there are ways around that. I’m also doing the intermittent fasting. After dinner, I don’t eat anything until about 11:15 the next day (my first break in the late morning). Most days that’s a 15 hour fast. I’ve even started drinking my coffee black in the mornings to keep to the fasting schedule. So glad the relationship is going well! And I hear you on the fatigue. I take my night meds at 9 (tamoxifen, baby aspirin and melatonin’s and I rarely am up much longer than that!
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