Starting Chemo September 2015; join us!
Comments
-
Shelly - Bummer - I'm sorry L-Glutamine isn't helping your neuropathy. That + B6 is all I've seen recommended. : (
(Snow has held off so far up here in the Brainerd area, although forecast says we'll get our fair share soon!)
0 -
Southern: Wait until the sx path. My stuff changed after each exam until the big bam of 7 cm with micromets in 1 node. Shocked my bs who thought for sure it was 4 cm and 0 nodes. So I'd wait as from reading other posts, seems most people's final result is at the post sx final path.
Had my labs done in the spa, I mean infusion center. The place is beautiful to start with and now with Christmas stuff out, it's very lovely. My bff RN Tammy who is my nurse there offered me egg nog coffee while I waited for the lab results. It was delish. All she did was Peet's French Roast coffee and added egg nog! No need to go out and spend more $ on egg nog coffee if you like both items separately too!
Labs are good. RBC are a little low so my pro-action MO is having me take Ferrous Sulfate 325mg iron daily so I don't crash since I still have a ways to go with chemo----even though I had iron infusions before starting. She is so pro-active with things. The nurses at the infusion center say her pts have the least issues because of this. She also likes how I'm taking a great multi vitamin like Alive for womens is because esp after chemo, I'm sure not eating right and you must keep youself nourished or you do struggle during chemo. She doesn't agree with the wait until after chemo to fix your diet. Why crash and then build yourself up? I agree. Maybe that's why I haven't had terrible post chemo days that sideline me.
I asked again about the lung nodule to make sure I understood correctly even though I know I did. So if it's still there after chemo, it's not cancer. If it's gone, it could have been or maybe not. Maybe it was an infection that cleared up. So if it's gone, it's a may or may not be stage IV and I'll still be treated as stage III going forth keeping a closer eye on me.
Got my chicken caesar salad on order as it was delish last time for lunch in chemo tomorrow. Good lunches, drinks, the view, the nurses and staff make chemo bearable!
0 -
Anyone palb2 gene +?
0 -
So much to catch up on. I hope everybody's Thanksgiving was pleasant.
Ooph - less invasive.
Neuropathy: L-Glutamine (10g) x 3/day - order online & in bulk bags to keep it cheap (i.e. $35-70 per month), but watch the concentration. B-6 (100) x 3/day - Amazon has a cheap "add-on" bottle. The stuff in the health food stores is expensive and will add up to $1000 fast. Massaging my fingers and feet seems to help with the weirdness.
Husbands - suck sometimes. Mine seems more concerned with what he's getting for Christmas than what I'm going through. COAL FOR EVERYBODY!Thanks for all the ER visit stories. Sympathy for all of you who are dealing with that now. I think I was finally getting over my cold after 3-4 weeks when mom gave me her thick snotty version.
I'm sitting at 3 out of 12 Taxol infusions (4th on Wednesday). Still on schedule. I GOT TO SKIP THE TRANSFUSION! My numbers came back up in time. How? Any number of things might have helped...
1, Eating more protein & cooked greens (Raw spinach will even block iron absorption.)
2, I'm taking my 1/day multivitamin again. (~100% of daily values, no more).
3, More water.
4, Husband's catholic relatives sent a prayer shawl that arrived a few days before D-Day (see picture).
5, Maybe nothing I did. AC or cold virus finally left my system, hopefully.
Thanksgiving Foul-Up: I had a glass of Moscato with a bunch of ice in it the day after transfusion. I didn't even think about it, it was such a sweet/weak drink & everybody was at my house and happy and celebrating. I had to take a double dose of my anti-nausea meds and the burning feeling in my stomach that wasn't going away. I was in the shower at 3 am with the hot water streaming down my back as I waited for the next dose of medicine to kick in. Still spend the whole next day in bed & the big D was quite daunting (Probably made worse by my religious use of Brown Cows). As I was lying in bed, I read that Taxol is alcohol based and drinking can amplify the effects. WEE! This week is the first I've experienced the neuropathy too. Major Oops. This was worse than not eating when taking steroids.Stomach: I got you, my pretty! And your little cat too.
0 -
Shelly52: ki67 is factored into oncotype score I believe
Aga: I'm in Miami
0 -
oh man lol rub it in Artista
you lucky gal
0 -
- Aga - I am still waiting on my genetics results. I was supposed to meet with the genetics counselor, but then I ended up in hospital, so her next appointment is mid-December.
0 -
I also asked about Taxotere. She feels it is stronger than Taxol and should be given every 3 weeks and not every 2. For Taxotere alone you don't get Neulasta so you need the extra week to build up. Dang. I was hoping to have it every other week like the AC to get it over with but alas, my chemo time has been extended.
0 -
ki62 is a factor for oncotype, but not the sole factor.
Lisa, good to see you back here! Yaaaaay for no transfusions!!!
As far as a holistic doc, I'd say ask people you trust in your area.. Mine came recommended by our nanny, who has lived here for 40 years and has taken all her children. Then I asked around and everyone had heard of him and he has a great local reputation and 5 star reviews on line. He works with whatever you decide to do treatment-wise and supports those decisions nutritionally and with supplementation. He has a lot of evidence about how to create an environment in your body not conducive to tumor growth but never claims to "cure" cancer. His iodine supplement completely remedied my son's brewing,thyroid issue such that the pediatric endocrinologist rec'd no treatment at all. And he doesn't charge me for any follow up questions, advice, or recommendations during my cancer treatment.
0 -
Florida roll call: I'm in Fort Myers.
0 -
i have my rads sim tomorrow. I'll let y'all know what it entails when I get back. Supposed to take a while. I have to be there at 8.
0 -
I have my rads sim tomorrow morning also.....will also report back.
Octogirl
0 -
Nice. They told me 1hr for rads Sim, but they might be fibbing
0 -
I was told it could take several hours...
Octogirl
0 -
As far as diet, I radically changed mine before chemo and it is also easy for me because I have been blessed with very few stomach issues and minimal mouth sores. For others, it's totally impossible through no fault of their own. The poor woman next to me this weekend could only eat mashed potatoes and drink through a straw, her mouth was FILLED with blisters. I felt so bad for her and wished I could have helped.
And the woman across from me had thrown up for 24 hours straight. No way could she handle kale or beets. I believe I compromised my immune system before chemo by losing 20 lbs right after diagnosis due to anxiety and the 2 surgeries. It's making it harder harder to handle strong chemo when it comes to WBC/ANC. The last red devil did a number on me.
0 -
Good luck to all the ladies starting rads!!! That's another step closer to....the END, woot woot!
Skittle, thinking of you as you get ready for genetic testing. I know as a mom, it's not where you want to be. Big hugs!!!
0 -
What's sim? I met my RO twice already as part of their program. You meet your whole team before you start anything. First visit was to get to know me and review my records. Second came after sx with the final path in hand. Mine will be 6 weeks M-F 20 min sessions. They'll review with me everything they told me again before the first rad since the info is mostly gone by now.
0 -
a Sim in just short for simulation. I met my RO, well a few for second opinions. The Sim will be the scan and positioning of the radiation apt. I'll get a few small tattoos of dots and an idea of what 20 sec breath holding will be like lying on the rads table.
0 -
Oh ok, thanks El. I don't think I'll have problems holding my breath! lol
0 -
I should be fine, used to swim laps
I'll probably have to pee though. Lol I did right before my biopsy right after they numbed me.
I joked about it and the 20yr looking 40 yr old doc actually took me seriously and he asked if I could hold it. Some people no sense of humor.
0 -
Just had time to catch up! Grey - good wishes to you in finding an MO you can feel good about. That is so important!
I had a rough two weeks (off and on) after the first Taxol. Lots of pain and exhaustion a few days after the infusion. Had the Neulasta shot day after T.
One solution - MO said that I could do T every week and I said no way! I am so set on being done on Dec 30, doing this every week and going into January is not an option!
So he gave me some Percocet. He also said the Neulasta could be causing the pain (and sheer exhaustion) which I said didn't make sense because I had no problem with it during A/C so I deduced it was the Taxol.
My chemo nurse just explained (thank heavens for these Angels!) why it was most likely the Neulasta. She said that I only have a little steroids (lots less than A/C) which helped during A/C with Neulasta SE's. Also, my counts were not that low and the artificial surging of counts was wrecking havoc in me, including the fevers I had! So, NO Neulasta will keep that at bay!! I have hope!
Now to see if this is the key. I love hearing all your discoveries. So I hope this info helps some of you! I will keep you posted!
All the info we can share is helpful. For those who were talking about scores - someone mentioned that if you have a positive node, they don't do the scores and that is what I was told about the oncotype score when I asked. I guess it ranks how aggressive it is and if it's in a node,it showed its true self already! No oncotype needed!
BTW - if you are looking for the poop fairy, she's been here in AZ for a while. Guess she loves the beautiful sunshine! I'd rather have her than her evil twin, the big C! She visited about 10 days ago and the fairy wins hands down!
Have a great week warriors! Can't believe it is December already! Never wanted time to fly until this fall! We can do this!
0 -
Hi ladies!
Sailor, so glad you are on the mend.
. I went in for my 4th Neupogen shot today. If my ANC is 2.0 or higher tomorrow, I can start DD chemo. But now I am flirting with a fever for the first time (99.5) and hoping it stays low. I am already on prophylactic antibiotics.
0 -
Good luck cajunqueen!
Also - diaper cream is my friend! (Burt's Bees brand). Ahhhh relief!
0 -
had my rads simulation last week. The actual sim (minus meeting with the nurse) took about an hour and fifteen minutes all together. Uncomfortable staying in the position for the time but nothing yucky. I didn't get tattoos I got marker Xs all over with special tape on top. I look like a treasure map. I'm going back in a half hour for them to take more positioning pictures and then I start tomorrow
0 -
The poo fairy has also been visiting me in Atlanta this week. She's been quite pleasant company, but is flying away as I'm getting Taxol at the moment. She hates Taxol. Hopefully, she'll be back by the weekend.
Cajun: fingers crossed for you! My counts are high after Neulasta and steroids (the PA told me today that steroids can elevate WBCs). I wish I could send you some.
Good luck on rads simulations Arista and Tigre! Mine will be next month.
0 -
Delays are horrible. I remember waiting each week to see if I could have Chemo. I was relieved when I could finally get treatment.
Also about the Oophrectomy vs hysterectomy. the only reason I was told that it would be worth it to remove the uterus would be if I might take Tamoxifen. It is hard on the Uterus and increases the risk of uterine cancer. Because so many women quit Aromatic inhibitors many switch over to Tamoxifen so I am trying to decide. These are the relevent studies that I have found about Hormone therapy
Lancet article about AI vs T without Ovarian suppression
SOFT/TEXT Study with ovarian suppression
Here is ASCO review for BRCA1 and BRCA2
The decision to perform a concurrent hysterectomy should be individualized. Salpingo-oophorectomy alone confers a significant cancer risk reduction with less surgical risk and shorter postoperative recovery. Arguments in favor of hysterectomy include a more simplified hormone therapy strategy (with estrogen only) and a theoretical increased risk of cancer in the cornual fallopian tube. In addition, hysterectomy may be considered where there are other medical indications for removal of the uterus and cervix. For women taking tamoxifen, hysterectomy may be considered to reduce their endometrial cancer risk.
0 -
good luck with sim Annie & octo.
Sailor DD taxol got a bit easier with bone pain from the neulesta, esp after my last,3rd dose. Neuropathy still sucks but was better after a reduced dose last week. I am supposed to go for my last next wed but I think mo will cancel due to neuropathy. Maybe your pain was left over AC still in your system? And could you please send the poo fairy for a cross country to the east coast? I could use a break from the big c. I busted out the big gun prunes yesterday
So strange story from thanksgiving. I went to my big sisters in the city and fell asleep after dinner in her bed right before my neulesta auto injector went off. My sis has a 13 yr old cat that has thyroid issues. Well the cat jumped on the bed while I was sleeping and kept watch over me while my neulesta was infusing. At 1 point I woke up, thought I was dreaming because the cat was staring at me.
0 -
Scotland good to hear from you. I'll send the poo fairys cousin to you, she has special post taxol healing.
Canjun I have fath u will b ok for mon.
Edwsmom & Lindy hope you are ok.
0 -
exercise, I will admit that I am a little scared of 10 years of AIs. In the end, more scared of a recurrence or ovarian cancer due to brca2, but I totally understand why people don't want to take them. How does the palb2 mutation affect things? I admit I've never seen 2 totally different types of cancer in the 2 breasts.
Would somebody trade fairies with me? Poop fairy for ANC fairy?
0 -
Hi Shopgal
I hope you're doing well today!
I'm hanging in there. Crazy busy week/weekend. Got through Thanksgiving and then had my son's birthday party on Saturday (think 13 toddlers). By Sunday when all the house guests left I was flat out exhausted and tried to crash and relax a bit. Back to work this week, trying to keep my head above water about everything - work, home, Christmas shopping, decorating the house. I'm trying to do a little at a time and more this week since I feel better. I have round #5 next week - sigh.
My problem seems to be that with each cycle it gets harder and harder to bounce back. I dread chemo more and more. I have two more left and it feels like 10 more.
I'm starting to have real aversions to things that remind me of chemo. There are going to be lots of foods that I'm not going to want to eat for a long time after chemo is over just due to it reminding me of chemo.
I'm meeting with my BS tomorrow to map out the plan for my surgery. That's a whole other scary thing that I've been trying not to think about. I've had surgery before, but not a surgery as big as this, so I'm super nervous about the recovery. In the beginning of this process, I also didn't really think about the fact that this is going to be more than one surgery. I had it in my head that it would be one and then that's over, but that's not the case. As a result, I don't have any real sense of when this awful journey will be over (for the short term anyway) so I'm having trouble keeping my eye on that end point. This process just seems to go on and on and on....
0
