Starting chemo February 2018
Comments
-
Cbok- Simply Gorgeous!!!
0 -
cbok- the wig looks amazing. You look great
0 -
CBok simply gorgeous!!
0 -
I took some probiotics after round 1 and I think that may have been the source of my mystery fevers.
Lolotte-I found fasting for round 2 harder than round 1 because I was so nervous the first time that food wasn't appealing anyway. Then when I felt better mentally food was a happy thing again and hard to give up again. I'm interested to see how you do next time with food. I'm headed into the fast for round 3 this weekend. What kind of broth are you using. I actually have been drinking broth as well. I found a company online that sells nothing but different bone broths and bought a big frozen box of it. They're very bland to start with and I always add salt, garlic, rosemary and whatever spice I'm in the mood for.
Have any of you read "The Emperor of all Maladies-A Biography of Cancer" by Siddhartha Mukherjee? I'm listening to it on audible right now. It's actually pretty interesting.
0 -
CBOK Ihaven’t heard of it but going to check it out- thanks! Somehow I missed the pic of your wig before but it looks amazing! You didn’t a great job with getting the height out of it. My stylist is going to thin mine when it comes in because my hair is pretty flat and will look so unnatural with a lot of volume.
0 -
22fightfor Congrats on the clear scan that takes away so much stress and makes in some ways the battle easier because you know beat this current monster and then you are done.
Moth so happy that you are doing better.
Deb hoping your round 2 is easier for you glad your team recognized you needed something changed.
Pbello this effects the entire family so you are doing the best you can for your little man.
Aanoliver sending healing thoughts your way so you can get back on track.
Round 2 after 6 hours is finally done. My port ( 2nd one as the first never worked) was a huge problem again today, my body is trying it's very best to reject the foreign object that is my port. So once again the could not access my port because of what they hoped was a protein sheath. they have a drug they use to eat away protein sheaths normally takes about 30 minutes it took almost two hours and two doses of the medication to eat it away. Finally get the port to allow a blood return when, oh my gosh what is all this fluid leaking around the needle? It is blood tinged and it is leaking like crazy. Stop everything again off to x-ray again. Turns out that they had to go through a fluid pocket ( I know it has a fancy name but chemo brain can't remember the fancy name) to access my port and now that fluid is leaking like crazy out of the hole the needle made. They decide to put a gaze pad over it all tape it loosely and do chemo. Try to get a blood draw again and again it will not allow a blood return have to do some crazy turn this way hang over the chair just some crazy stuff but finally the get blood return again. I was to start chemo at 11:30 am finally got started at 3:20 pm and finally done at almost 6:00 pm. The fluid is still leaking from around the needle and of course when they remove the needle it just gushes. Thirty minutes later it begins to slow they cover it with a very soft guaze and cloth tape send me home with a bunch of guaze and a big roll of extra wide cloth tape. I am to change the pad every two hours cleaning the area well with antibacterial soup until it either stops or Monday when I see the surgeon. I did get to make some folks smile with my nice hare bunnies including a young 22 year old getting her first dose of dense dose AC. She wants some for her self so next time I will bring some for her and even if she is not there at the same time I am the nurses have agreed to make sure she gets them.
0 -
omg CBokit’s stunning!
0 -
AMBurt, your port is awful! You are so courageous to go through this like that. I admire you! I have a Groshong catheter which is inconvenient to shower but blood can be drawn easily and medicines go in easily too. Wish you few to no SE.
CBOK i did the broth myself: 1lbs chicken breast, 1 broccoli crown, 3 to 4 carrots, left over celeri branch, maybe 1 leek (I don't remember), 1 shallot with whole cloves spice (looking like a nail brown color) plus bay leaves, thyme, salt, pepper and a lot of water. The first lunch time it tasted amazing and satiated me for 5 full minutes but after that it tasted all bland. Today couldn't finish the first bowl in the morning, couldn't stand it anymore. Tonight I felt so well after chemo that I decided to skip dinner. I'll to stick until tomorrow night hoping I will have the full benefit of fasting even with my eating a banana and some nuts.I am not hungry so far...
0 -
CBOK, your wig looks fantastic! Ambert your port experience had been a nightmare, so sorry. As far as the probiotics I just asked my MO yesterday and he did said could take them took 2 today as I had loose bowls again but I am going to switch to yogurt now, why do these docs not have the same info grrrrr! Had my neulasta shot this evening had some bone pain last time even with the antihistamine. I lost 10lbs since this all started Doc didn't like that. Hoping this round goes better, for all of us!
0 -
hello - I'm from the December chemo group and just wanted to share something I wish I'd known earlier. Several of us from December have done 4 AC and many of us ended up with PTSD like symptoms for the last dose. I don't want to alarm anyone, but it would have been easier for me to know that this was a common reaction. I think each of us were absent from the forum for a few weeks at the end of AC in order to avoid anything triggering.
The important thing to know is that taxol is really different. And the PTSD will feed quite quickly went AC is finished. If you have a really hard time at the end, know that it is normal and does not mean you are weak! You are strong.
Gentle hugs, Geneva
0 -
Lolette.. is that recipe for one bowl of soup or .. like How many servings ? I am gonna give it a try.. also How long do u boil it like some people do it 24 hrs+
0 -
Cbok, nice wig. You look really good. I had a good laugh about the bigger the wig the closer to Jesus. I tried on wigs while I was down in Palm Springs and it was so funny. In everyone of them, I looked like one of the "real housewives" and I knew I just couldn't do it in my smallish sporty town where I bump into everyone when I go out. So finally, I got a hair piece that you can put in a hat. It's cute and the colour is good but I still haven't had the courage to wear it out. I'm not sure now why I bought it.
So I have a question to anyone doing the every 3 weeks rounds, do any of you get your energy back fully? I'm on day 9 of my second round and still have a hard time doing small things. I can walk the dog but an hour on flat ground and I'm done. I have lots of stairs in my house and they seem to really take a toll. Housework is really hard. Last round I played tennis week 3 but was so easily winded I had to sit out a bit and then after my legs felt like lead and I had to nap. My Red blood counts are down, so mildly anemic but wondering for those of you whose blood work is good, what week 3 feels like. Any input appreciated. Maybe my expectations are too high. But I'd like to have one week where I actually can get something done.
22fighter, good job. good results are worth celebrating.
pbello, sorry to hear your little guy is struggling. I used to teach that age and all I could say is keep cuddling and praising his good behaviour. Hopefully the teacher can be on board with a tender heart for him. Kids (and many adults lol) at that age don't have the words and reasoning to talk out their complicated feelings so it comes out as behaviour. It's perfectly normal and healthy for him to have a reaction. Sending you good vibes and love.
22 fighter, good idea to do an online course during treatment. I find sometimes boredom to be one of my bigger SE's. And what a great course to take! Growth mindset can help us all through this struggle. There is a cool set of videos for kids about growth mindset on classdojo. check it out.
OK, long enough post. I'd like to send love and courage to all the February people. Wish I could do it personally but man, we've become a huge group.
Here's a pic of my new hat/wig.
0 -
Laurie- the hat/ hair is really cute. You must be in way better shape than I am with all that you do. That said, for my round 1 I felt like myself for week 3. Hit the treadmill, cleaned the entire house, danced around the living room when no one was looking. I even ate some of my favorite foods.By then my hemoglobin had dropped to about 11. Not too bad. Right now I'm on day five of round two and sweeping the kitchen left me winded. I'm really hoping to bounce back for a good week 2-3 but I don't know. Hopefully you will get your full energy back, but I believe low hemoglobin can leave you exhausted
0 -
New Port used for Chemo round 2 on Tuesday. Treatments went better than 1st round. Again was early enough to get a close-able room to protect me from random hand sanitizer, fragrances and so much more. Another great nurse! Only 8 hours instead of 11 hours in infusion center.
Tried Neulasta OnPro and it worked perfectly. Interesting!
Had IVIG infusion for CVID (a rare primary or genetic immune deficiency which means I don't make many antibodies) on Thursday. IVIG nurse very happy I have port now.
Hair is coming out more quickly now. Interesting! You all look so good in your natural state and with wigs and hats!!!
Problem yesterday & today is mood swings! I'm 64 & well past menopause! Any others my age get sudden mood swings? On one hand, can only be a side effect to meds but very annoying. Fatigue already an issue from multiple chronic conditions, and i'm coping with nausea, funny tastes, vision problems, and "interesting bowel issues" but the mood swings and un-relenting chemo fog are really disruptive!!!
Thanks for your input!!
0 -
CBOK,
That is one gorgeous wig! Damn.
0 -
Hello everyone,
The broth I did was for 4 days, 3-4 bowls a day. I cooked it for 2hrs and ate the vegetables in about 3 settings and froze the chicken.
Laurie I love your hat-hair. It suits you well. And thank you about the class dojo tip. I know that one of the assignments requires me to select a game to explain to the kids that intelligence can be grown. I will be sure to check that website! If you are interesting in taking a class, you can go to learners edge website. They courses are counting toward points to renew license in U.S. and cost about 400 dollars. I feel it is a good deal.
One question for everyone. I have noticed that my cancer side breast has become red where my tumor is. The weird thing is that it started before the chemo treatment. Did one of you experienced the same symptom?
Nem7AZ and debs: wish you all the courage I can get you to go through your SE.
I am 24h after first round chemo AC and 4th day fasting. I woke up with mild headache for which I took paracetamol (it is like tylenol) then i was weak the whole day, I almost fainted when I took my shower. Nonetheless, I decided to go to the movie and watched Black Panther. It was a nice one. I think that I am suffering SE from my fasting. Will I be able to continue up to the last day? Will see tomorrow. Today was Ok because I wasn't hungry but tomorrow we don't know. Also I am extremely cold, I am wearing polar fleece jacket and winter coat under a blanket and I have still goose bumps... and I am so white never been that white before.
0 -
CBOK, Laurie - you both look gorgeous!
Boyfriend shaved my head last night so now i'm completely bald and not minding it too much. He was so sweet and complimented me several times on my look lol.
Ladies, just wanted to share - came upon this website for some cute hats, beanies, scarves, wigs etc:
Hugs to all. Hope you're enjoying your weekend and, if there are side effects, they are manageable!
0 -
indahood- I had a double mastectomy with reconstr. so I was just getting my energy back with thay before I started chemo so even tho I feel good the 2nd and 3rd week , I still feel like I can't do as much,a lot of walking when it was nice bc running, but overall good, but still was getting back to normal from the surgery.
Pbello-sorry to hear ur little guy us having a hard time! I have a 3 and 7 yr old, i think 5 is a hard age for them to grasp something like this. With my 7 yr old I did alot of reassuring I'll be ok, it's not a big deal, I'll get better, bc altho I wanted him to understand, I didn't want him to worry. There are also amazing books out there to read to the kids that may help. I also got them stuffed animals to hug when they couldn't hug me which helped.
0 -
what's the deal with the fasting for Chemo? I haven't heard about this before,..could anyone explain? Thank you!
0 -
I asked my chemo nurses about fasting for chemo they said none of their mo's recommended it. But of course we have to all do our own research and decide what is best for us because none of us react exactly the same to any of this. So I hate to jinx myself but on my 3rd Day Out I have not started back up with the wicked Big D hopefully taking the perjeta out of my meds did the trick. Hope you are all feeling as well as possible. PS those of you with young children at home I send extra hugs this has to be really hard for you I can't even imagine.
0 -
Jlove, I got the fasting info by googling Dr. Longo and chemo fasting. Sorry I can’t link any articles, it’s just beyond my capabilities tonight. I believe they were trying to get some clinical trials going to prove if fasting helps with side effects from chemo and also helps the chemo be more efficient doing its job. It’s a compelling theory, but yet unproven so you might not get much info from your onco, or the nurses or dietitians at your center. You can also look around this site for extra info as other members have talked about fasting with chemo
0 -
Here's one of the easier to read explanations. I'm skeptical but willing to try. Longo has some financial interest in his theory about the fasting mimicking diet working out which makes me even more skeptical but it makes me feel like I'm doing something.
https://www.sciencedaily.com/releases/2016/07/1607...
There is also a human trial underway but enrollment has closed.
https://clinicaltrials.gov/ct2/show/NCT01175837
Laurie-love the hat hair!
0 -
Nem7az I am 62 almost 63 and yes the mood swings are a bother for me also. My MO said to expect them because of the steroids I was on and that for many who are post the big M they can be more noticeable, so if steroids are in your regime that is more than likely the culprit especially if the SE lessens when you stop them.
Deb great news that the big D is leaving you alone for now. You had it so rough the first time. I am hoping the new plan for my nausea works, like you I lost a more weight than they like almost 13 pounds. I don't mind the weight loss my self as I am about 60 pounds over weight but this is not any type of diet plan I would wish on anyone that is for sure.
Indahood the wig hat combo is to cute! You look great in it.
Lolotta19 is the tumor very close to the skin? Mine did that as I was waiting for everything to get started and actually began protruding out through the skin. It is why my MO who is the head of the oncology department where I am getting treatment agreed to take my case she can pick what she feels is a more interesting case. It was how the MO was able to measure it with a normal type tape measure and how we can tell so easily it is shrinking. It actually turned red where it stuck out and then this horrid purple color. Now that it is smaller it has turned red again. I hope before the 4 AC treatments are done that is all back under the skin and think my MO hopes that as well.
0 -
lolette, thanks for the recipe 😊 will surely try it asap
Guys, even my doc dint not mention about fasting in particular but she told me its better not to eat one hour before chemo infusion.. during my infusion last time my nurses told me to eat and drink and do what not ..
if it really shows a difference in SE or if its suits ur body i think its okay to fast as well..
indahood , u look cute .. even i am wearing it with a beanie combo like urs
0 -
hi girls, wore the wig out tonight. It was fine but I keep worrying that it's going to slide some which way and I won't know it. Of course it didn't but I can't help but feel awkward.
CBOK and anyone else interested, I watched an entire documentary made from the book Cancer The Emporor of all Maladies. It was excellent and I thoroughly recommend it. It's on youtube
0 -
Ha, I didn't think about youtube, I just bought the bluray so my husband would watch it. He won't pick up a book.
0 -
laurie, can you post the YouTube link for the documentary ? Thank you!
0 -
Hi All,
Today is day 5 after my 2nd round of dose dense AC, this time it was worst, lost my hair Thurs had chemo on Tuesday. I'm unable to keep anything dowdown even with nausea medicine. No one advised me about the bone pain with nulasta and I was in tears this week. I have held it together pretty well until my boyfriend buzzes my hair. I feel guilty that i can't even do chores or be a good mom to ny two kids at this time. Never did I expect to feel this shitty.
0 -
hello my pink sisters Hope everyone is as well as can be... I’ve been having a rough time with SE”s an personal issues... Just did my 2nd round of CTHP on Friday and not feeling my best but not feeling my worst either... Lots of hugs and positive vibes my sosters
0 -
0
