Chemo Starting August 2018
Comments
-
You’re closing in on the finish line, Benji!
I haven’t noticed my nails growing at a different rate during chemo I developed weird lines in them, horizontally near the bed. That gradually moved up and is almost grow out yet. The ends still peel a little, though, so I keep them cut really short. Another odd thing is that my head hair is growing like crazy but not my legs. I can go weeks between shaving and you can’t tell. (Not complaining about that!
0 -
It’s like a crazy science experiment. My hair is thicker, curlier but still white; eyebrows thicker and darker; eyelashes back but bending the wrong direction; lots of unwanted leg hair, nose hair and mustache all back to normal. Now they are experimenting on my skin. After 22 of 33 treatments it’s pretty red but still in one piece. I’m doing fine and I think I am holding myself back a little to keep it that way. Hope everyone is doing well.
0 -
hey ladies, I have missed you! It’s cool to hear everyone living their lives and enjoying themselves. Benji, you’re so close to the finish line!
I have made the decision to stop Xeloda, it’s just been too hard on my body. Every rotten SE! I’m done. It was a crapshoot anyway, as I’m chemo-resistant. I’m secure and happy with my choice, as is my family. I will deal with recurrence if need be.
I’m looking forward to living it up this summer! Woot woot!
0 -
KiWilli, I’m sorry you have been having a tough time but happy for you as it sounds you have made a decision and you are comfortable with it. Hugs.... remember we will always be here for you if ever needed.
I’m close to being done, 4 more infusions and then just one little anastrozole pill a day for at least 5 years. I am healing from my reconstruction surgery so I’m looking forward to Aug 1 as that is the day I amcounting as being done.
Now it’s time we all go and just try to live our life to the fullest. I’m wishing all my August Chemo Sisters get everything they desire and go do all that they desire.
Hugs to you all.
0 -
KWilli, I am sorry Xeloda was so tough on you. It's always a risk and benefit analysis with any medical intervention, and when the benefits are dubious and you are definitely hurting yourself, the choice is clear. I am sure you will enjoy healing/ getting back to normal at last, after so many months... it happen fast when you stop beating up on yourself with more chemo! I send you a hug! Ask your MO about the other stuff (metformin, melatonin, baby aspirin) with demonstrated anti-cancer properties, and no SEs...
Benji - My comedy line is "someone else's hair grew back on my head." Darker, more grey, THICK and hedge like, more wave and body. I who have had "fine, thin, limp" my whole life. I got Rachel Maddow's hair, age 60.
MACTAZ, you are right at the finish line-- that is so exciting. It's amazing what our bodies can do. All the healing we are capable of!
August will be a sweet anniversary for us all! We will need to celebrate!
MGJ, how are you?
It's finally starting to feel like "post" cancer life now.... I am finding my normal. At last, I feel my old energy is back, and it's such an incredible feeling just to feel GOOD again.
Right now I am in Cape Cod w my daughter and son-in-law. They came up to meet me here and help my rental house for the summer season. It's really nice having them here. Last night my SIL made an insane dinner of swordfish on the BBQ which was delicious.
Love to all!
0 -
I have a question for those of you who got their ports removed. I plan on doing it immediately after my last infusion but I have planned a fun vacation with my girlfriend in Florida on Aug 22nd. I plan on doing the beach but was wondering how long it takes to heal? I don’t want to worry about infections so if need be I’ll postpone it until I’m back, but it would be soooooo nice to get it out.
Love you all, Santabarbarian, I’m so glad you are doing so well.
0 -
KWilli - Sounds like a good decision - quality of life matters.
MACTAZ - How long after your surgery would that be? I got my port removed (in February) and went to Key Largo three weeks later. But I could have gone earlier than that - I was pretty well healed at a week. Probably would have made it two to be safe.
So I was slicking my hair down but curls were starting to spring up randomly and I don’t bother any more. I’ve git the fluffy baby chick thing going now:
0 -
Wanderweg, how cute, did you have curly hair before. I think I would like it to get curly, mine has definitely changed color, I swear I was blond without dying and now I’m pretty much all grey and white. It is also soft like baby bunny fur, my DH loves to walk by me and rub my head.
I will try to get it out at least 2 weeks before my vacation, leaving Aug 22, but it will be close. Sounds like if I can’t get it within that time frame I should delay it until I get back, thanks.
0 -
OR you could get it out *before* your last infusion have them do an IV for the last one. I don't know if you remember, but my port was never good -- I had it removed partway through chemo, and did a regular IV for my final few chemos.
0 -
Wanderweg - mine refuses to behave but it's not curly. More like a permanent bed head.
0 -
MACTAZ - my hair was completely straight before. I think it’s a little thicker now and also super soft. My husband can’t keep from rubbing my head, too.
0 -
SB, I know this sounds weird before I even write it but I’m deathly afraid of needles. For some reason the port doesn’t seem like a needle, maybe because I can’t see it when they stick me, who knows how my mind works. Also, with as many times I’ve been stuck in the last 9 months you think I’d be over it, but alas no luck. I’m headed to dentist on Monday for a filling and have been freaking. Hard to believe that this all still bothers me considering.......
0 -
MACTAZ - I have a serious needle phobia, too, and when my first oncologist said a port wasn’t necessary, I changed oncologists. I was also happy to delay getting it removed until after my ankle surgery so they could use it for the anesthesia. I didn’t like having it accessed, but it was way better than an IV. Now that it’s out, I have a hard time falling asleep the night before I know I have labs
0 -
wanderweg, I totally understand. Once it’s over I always say that wasn’t so bad, but that never sticks with me for the next time.
0 -
Hi guys, looking for some hair advice since most of you are further along in growing it out. It seems now I have cowlicks in several places, my hair definitely has a mind of its own. I've tried gluing down with gel or spray, doesn't work. Any tips? Also, did you go to a stylist and try to figure out how best to grow out?
I'm doing well but am getting tired of being sliced, diced and poked. My boobs look pretty good, but the implant side does have some excess skin that I assume he will tweak at some point. The other one where I had reduction looks marvelous, still sore and healing the size is perfect. I'm so glad I went smaller. I'm on tons of supplements to try and battle some of the SE from the anastrozole and left over SE from chemo; neuropathy, bone pain and sleeplessness. BUT overall I'm happy and staying active no matter what. I can see fewer doctor appointments in my future, I have at least 3 or 4 a month now, but I'm close.
A new challenge came our way last week, hubby diagnosed with diabetes. It was unexpected because he doesn't have the classic symptoms, not over weight, exercises regularly. But it will make him change his diet which I have been trying to do for some time. Now I can finally work on getting more veggies - looking forward to making the recipes you shared.
Thanks all, hope you all are doing well. Has anyone heard from MGJ or Hughope1?
0 -
Mactaz my hair is best if i slick it back a la Miami Vice when wet and let it dry that way. That helps. But it is very tousled and unpredictable.
How I am planning to grow it out is-- to keep on cutting from my ears down "boy" short, and to let the "top" get longer and longer. Then when the top part hits the earlobe level, it becomes a blunt cut, & I will grow the lower part out too.
Hughope1, MGJ: yoo hoo, How are you??
0 -
MACTAZ - I don’t even try steaming my hair right now. I dried off with a towel when I get out of the shower, and fluff up the curls with my fingers. That’s it. I think when the curliness grows out (assuming it doesn’t, I’ll just it very short. I’m sorry about your husband’s diabetes, but getting to cook with more veggies is a silver lining.
I honestly still am not used to the way my reconstructed breasts look. So not like me. My only remaining symptoms, aside from some brain fog and fatigue, are hot flashes that include tingling/stinging in my skin. Mostly my extremities. It feels like I’ve run into fiberglass insulation. I asked my oncologist about it and he thinks that the tamoxifen is causing hot flashes which then trigger residual neuropathy from the taxotere. He thinks it will eventually go away. It’s unpleasant.
My husband is off visiting his mother and I’m having a nice weekend home on my own. This introvert is happy! I plan to spend as much of it in the yard as humanly possible and make a crockpot stew and some whole wheat sourdough bread so it will all be ready for dinner Sunday night when he gets back. In other interesting news, my older son texted to wish me a happy Mother’s day and casually mentioned that he was at the airport on his way to Cartegeña. Apparently students from the optometry school he’s in do medical missions trips in Colombia, and this didn’t warrant mentioning. Kids
0 -
thanks SB and WW for the hair hints. I guess I just have to let it go. I probably will keep sides trimmed till top gets longer but I’m thinking I might also keep it short. It is easy to take care of, except that darned bed head.
WW hope you start to see your SE subside, my neuropathy is more numbness in fingers and bottoms of feet, versus the stinging and numbness you have. My OC said the SE could last up to a year and eventually go away. He cautioned though that some people never see improvement, I refuse to believe I’m one of those.
Hope your son stays safe, I’ve never been in that part of the world. Seems the younger generation live more adventurous lives then I did at that age. I took my first trip out of the country in my mid 40’s.
Benji69, you have to be getting close to finishing rads, whoop-whoop.
All take care,
0 -
MACTAZ - I took the kids to Costa Rica, the West Indies and Tanzania starting when they were 6 and 9, so I think they got the bug early. And y mom took us to Panama when I was 4, and I’ve been traveling ever since.
0 -
WW, that sounds like fun, my travel started with my job and I got to go to Europe, India, and Asia. I lived in Hong Kong for a couple of years and I definitely love to travel but I wish I would have started earlier like you.
0 -
I have only 3 boosts to go, 30 treatments down. I’m peeling a little and pretty red but doing OK. I haven’t seen anyone else mention this but my biggest complaint is my legs. After about #20 my leg muscles and feet have been annoying me. It doesn’t make sense and I need it to go away.
My husband thinks a good way to forget about this whole episode in our lives will be to get away in an RV. Lucy is now in our driveway just waiting for me to finish. Wish me luck!!
0 -
Yay for nearly done!! Give yourself a rest week after finishing because it gets worse for a few days before rapidly healing.
If you can get hyperbaric oxygen in your town it is very helpful to healing rads....
0 -
Benji69, congrats. I’m excited for you and enjoy your trip.
SB has a good suggestion about waiting a week, I’ve read this from several others who finished up rads.
0 -
Finished!! May 30 is one year since the doomsday mammogram. At least it didn’t take a whole year..Thank you all for your support and the best of luck to us all
0 -
I looked deeper into my bone density report. True I don’t have the density of a 30 year old BUT I am 110% for a 70 year old which I will take as a good sign
0 -
Whooo hoo Benji is done!!!!
Bravo!
0 -
YEAH Benji, excited for you and your better than normal bone density.
0 -
woohooo! Benji!!! Finished! That’s awesome news
0 -
I pm'd MoonGirlJess and she is ok. She had to delay her surgery due to blood work, and its a disappointment, but otherwise life is good & busy.
Hope everyone is feeling better and better.
KWilli, have you spoken to your team about Metformin or a Statin? There are some good studies showing that they are effective in reducing recurrences in BC and especially TNBC. I am on Metformin but thinking of folding in a statin too. I read a book called How To Starve Cancer by Jane McClelland who is NED after being stage 4. She did a ton of research on old meds with anti cancer properties and few to zero SEs and took a combo of them that blocked enough pathways of the stem cell life cycle that she remitted! The stem cell is the bugger that manages to survive chemo and lurk...
Metformin, baby Aspirin, and Melatonin are the cancer-active meds I am currently taking (also doing some cancer active supplements like curcumin, quercetin, Omega 3 fish oil, D3, EGCG.) Thinking about adding lovastatin. And I am also thinking about doing a course of mebendazole (pinworm drug) and doxycycline (antibiotic) which have strong anti-cancer properties against stem cells. I feel like now when we are clear is the time for a second assault, if the drugs are safe and well tolerated. We'll see what the MO says as I am going to ask him to prescribe them... He gave an immediate yes to Metformin as the stats on it are clear. It has not lowered my glucose too much even though my glucose was within normal range to begin with.
Anyone else doing proactive follow up like this?
0 -
Hi SB, so glad to hear MGJ is okay. I PM’d hughope1 and tried to call her, haven’t heard back. I know she is always on the go so hope that is the reason.
Im taking some supplements but I’m taking to counteract SE from meds. Im on calcium with D3 along with Fosomax for bone loss, B-3 and alpha lipoic acid to help with neuropathy I got from chemo, melatonin to help with insomnia from anastrozole and curcumin for inflammation and bone pain. I had heard curcumin had cancer fighting properties but didn’t know melatonin did also. I also started using flax seed as I read that it had a lot of healthy properties. I have also started eating much cleaner, can’t say I’ve cut out all sugar and alcohol but have drastically reduced. I have lost another 5 pounds, so I’m at a really good place right now.
I’m trying to be proactive about my health and I’m feeling almost normal. I only have 3 more infusions to go and the end seems so close. I do have a busy June with docs, brain scan, echocardiogram, dexascan, PS follow up, infusion, skin cancer surgery (atypical mole but since I had melanoma they excise all atypical moles). I think once I get past September I’m hoping it is smooth sailing from there.
I’m going to look up some of those other supplements you noted to see if they might help.
Take care all, xoxo.
0
