Starting Chemo February 2015

Jerseygirl927

the neuropathy group is not all that happy that theirs has not improved , so can't really trust the Drs saying it wil get better? So far everything they say about the side effects are minim and this week has been. My worst. I was taking an Epsom salts bath yesterday and noticed my right foot, which is where I felt the numbness first, my 3 toes are curling more than the other foot??? Now that the thumbs on both hands are noticeable and the tall fingers. So that was chemo 4. How bad do I let it get before really complaining on the numbness, they asked me to rate it? . My blood numbers were not that great this weak, plus being dehydrated more than I thought has kept me quiet for a few extra. I am ready to quit, but think only 2 more ? Potassium low, but that's cause I can't eat much, mouth sores. Low on white blood count too.

Since my port is broke, we have to wait and see what that brings? So why the fast before chemo? I know that sugar is not good, I am trying to avoid this, but not in fruit, I think cause it is complex sugar it is better for you, and yes watermelon is the best. What is the no no on cpin not sure what that refers too?

Feel better gals, it's almost over but not really!

MaryJC

sugar in any form can be unhealthy with certain issues such as neuropathy. So if I eat a ripe mango which can be syrupy sweet, it aggravates the neuropathy.

I think it's 100% time to sound the alarm. I was afraid of what #5 and #6 would do to me. I had said I was willing to do #5 at reduced dose even tho scared still but no 6. Then she emailed me back that the teams consensus was no more chemo, too toxic. Had also broken out in hives. Said too young and did not want me to start experiencing a disability. Shucks me too! I was ESTATIC!!!! So with the absence of sugar- which I didn't eat before chemo but started bec of chemo tongue, could only tolerate sugary cereals, UGH- supplements, acupuncture and time, it is subsiding.

Sugars cause inflammation. You will notice a diff if you abstain from it. In fact a diff in EVERYTHING. also sugar feeds cancer. Tumors have 3 gluclose receptors. Starve it of sugar, it starts to break down.

Fasting before chemo, protects many your healthy cells, exposes the cancer cells thereby making the chemo more effective. It lessons many of the side effects. I didn't get naseous once and although did obviously have some issues, was able to work the whole time. I'll postsome links.

The no-no was regarding some of the amino acids I have for neuropathy. I have ALA and ALC. Studies show L-Glutamine is great. Also acupuncture. Does your center have an integrative meds program or does your insurance cover acupuncture?

MaryJC

These are about fasting and intermittent fasting...

https://news.usc.edu/63669/fasting-triggers-stem-c...

http://healthimpactnews.com/2014/study-intermitten...

http://www.cell.com/cell-stem-cell/pdf/S1934-5909%...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC329619...

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC281575...

This is regarding sugar...

http://thetruthaboutcancer.com/quest/

MaryJC

oh forgot to mention, fasting also keeps blood counts up. I also used papaya leaf extract for platelets and WBC. My counts stayed in ideal range every cycle and I never had nuelstra shot. It's a shame the neuropathy caught up with me. I'm prone to neurological stuff. I've had MS. Cured! Not remission, cured! Officially undiagnosed and almost done with myasthenia. God willing cancer and neuropathy too!

Chloesmom

Sugar is so addicting. I was eating it like crazy when I had chemo mouth. Now craving junk I didn't eat before. Thanks for info Mary. Need to go into sugar rehab this week. Just kidding. Going to clean up my diet

MaryJC

isn't it tho? Once it's on your pallet it's hard to un-taste it. But it can be done. Berries have lowest sugar. But they can get so funky and moldy ewww.

Def do it. It's a challenge but the consensus always is quitting cold turkey is best way since it is so addicting. Keep me posted! I'm done with chemo but doing a fast this week to cleanse and reset. When I break-fast God willing I'll resume my healthy habits pre-chemo.

Chloesmom

And organic berries are $$$. DH keeps buying regular ones but the strawberries scare me because they are at tr top of the dirty dozen list

Dromedary

Good to get the reminders about sugar - thanks. I have become an unhealthy sugar-eater since this started - maybe making up for giving up smoking, but I never used to LOOK at a dessert menu or a have an open box of cookies in the house. Now there isn't one that gets away! Been "comforting" myself I guess, but I know it's not right and the weight is piling on.

Third of four dose-dense Taxol last Thursday. Normally today would be the first of the bad days. Just getting that way now, in time for bedtime. Doc reduced my dose a little as he's concerned about neuropathy and said I could try the Claritin. So far it's been a better day than the first two rounds - let's hope it continues. Morphine Darumama? Now THAT sounds like a winner. Hope you find something to help you out VR423 because in my experience, the Ibuprofen does exactly nothing for this bone/joint pain.

MaryJC

Claritin fit neuropathy? If so, what kind? You said it helps. How so???

Dromedary

No, I read here recently that Claritin helps with the bone/joint pain. Sorry, I was joining up two thoughts into one sentence: Doc reduced my Taxol dose because of neuropathy AND said I could try Claritin for the pain. Sorry for the confusion.

Chloesmom

if I understand it correctly the antihistamine helps with the pain as the bones work overtime to make blood cells after chemo. The Neulasta pushes them to make more to keep the counts up so the Claritan is given when you get a shot to counteract the additional pain it can produce. I haven't heard anything about it helping nerve pain, but don't claim to know much about it except I have it

Darumama

Been following the discussion about sugar with interest. Before I was dx I was a low carb eater for about three years. No sweets or bread. No sugary drinks. Ate a lot of eggs, salads, nuts. Drank tea of all kinds (no sugar, no milk) all day. If my PET scan is right (that this hasn't spread) I attribute at least some of this luck to the low sugar in my diet for those years. Since my dx I have reverted back to my crazy eating habits prior to the low carb days. When someone sent me a 5 pound box of Godiva chocolate days before my double mastectomy, I felt somewhat entitled to eat it. When AC chemo started I rediscovered the local bagel store. All the generous people who have given my family meals were not thinking low carb. This has not been good for my waistline. (Today I was in Target and as I passed the maternity pants I caught myself thinking that they looked very comfortable!)

Now I'm on Taxol, don't feel nauseous all the time, and want to get my nutrition back into shape. I went to see the nutritionist at the oncologist and was a little disappointed by the experience. It was kind of like reviewing the old food pyramid. I was really looking for advice on what a healthy diet looks like on chemo and what foods I should avoid while on chemo. The nutritionist advised me against any type of nonpeelable fruit or veg. Warned me about eating out. But didn't give a lot of good alternatives. (The MO, however, says eat what you want. Since my white counts are great he says I have the same immunity as everyone else.)

Anyway, I did find a site I like a lot about eating and chemo.

http://foodforbreastcancer.com/articles/what-shoul...

So, I'm trying my best to dial down the sugar/carbs in my diet. I don't want to be too extreme about it while I'm still undergoing treatment. And certainly the way I was eating before dx has room for improvement.

Darumama

Dromedary, I'm going for my third taxol Friday. It hits me later than the AC did and seems to persist a little longer. Since I feel generally more achy all the time I'm having trouble discerning whether I'm having muscle aches from the Taxol or bone pain from the Neulasta. I took the Claritan with AC and only was achy one time on a day that I walked a lot. The bonus is allergy season has been pretty awful in the northeast and it has certainly kept my seasonal allergies from adding to my misery.

As far as pain killers are concerned, doc told me it was ok to take an ibuprofen or Tylenol. I haven't suffered so much as to need anything stronger yet, but I do have leftover oxycodone from my surgery and I am not afraid to take it if necessary. Will ask at my next appointment. We actually plan on doing a little family weekend in Philadelphia in two weeks. I absolutely plan on packing the oxy in case all of the activity hits me too hard.

MaryJC

hey darumamam, good for you recognizing where you fell short. I did too during chemo. I didn't do sugar b4 and ate intermittentlyketogenic. Had this whole master plan to eat during chemo. Lo and behold I couldn't tolerate any of it! Just recently I decided to forgive myself and not beat myself up about it. Rather, the body responds so incredibly fast that if now that I'm done with chemo and it's toxic food party, I get back on the wagon, healing and repair will happen fast. I shrunk my tumor in 10 days- have the proof in the measurements. So it's never too late. We know what to do!

I'm fasting now until Wednesday to reset. Since I can tolerate foods now, I'll break-fast and stay the course. Let's partner up if you want👍🏾 Once you're done with treatment. Perhaps meanwhile let it be a treat on the weekends. Whatever works for you.

Jerseygirl927

how long before the taste buds come back? Anyone have any ideas? My port was not giving a blood return last Thursday, so no chemo or hercepton drug thru it, had it checked today, and the minute the dr put the needle in. Out came the blood? So they xrayed it to make sure there was no crack, and all looked good. So it's good to go. Anyone know if the her2+ in you body totally dies out, or never comes back? Is this a lifelong ptotein .? Also can it become stronger or more potent. I kind of new about the sugars but are we talking desert type or complex type from natural honey etc? I am going to read the links Mary sent to understand more.

Dromedary

Like you Darumama, I was very low carb and practically sugar-free before Dx for about 2 years - lost 30 lbs over 6 or 8 months, was feeling SO great and healthy, so this was a kick in the teeth. But like you, my pet scan was good, so I'm grateful for that. My son is getting married July 11 so I have a target to aim for and try to get myself at least working towards getting this steroid/chemo weight off. Will check out the nutrition link - thanks. I have avoided seeing the nutritionist at the clinic for exactly the reasons you stated - I'm afraid it will all be too theoretical and vague and will irritate me. I'd rather do my own research. I was on the "Fast Diet" or 5:2 before all this started. Haven't been able to fast - bit too much comfort eating going on, like you with the chocolates (!), but am hearing MaryJC and think that's what I'll need to go back to, before too long.

Re the pains - only started for me once I went onto Taxol. No pains with AC and I have been doing Neulasta all along, so I'm putting these down to the Taxol. Either way, it's a little better this time, either because of reduced dose or Claritin, although still having acute stomach cramps/aches/wind... ugh.

Jerseygirl, not sure I really lost my taste buds - quite a metallic taste all through AC but pretty much gone now that I'm a month out of it.

MaryJC

food tasted AWFUL for me. It would happen suddenly before another cycle when I was feeling fine. Just couldn't win. I'm 4 weeks pfc on Wednesday and it's been gone, thank God. But I'd rinse with biotein and that helped get the ick taste out my mouth. Food still was awful. Only extra sugary things tasted good. Hence I'm fasting now and hopping right back on what I know best to undo all that sugar I poured into my system.

I hear you with the comfort foods! Don't beat yourself up tho. Try low sugar fruits. This way u can eat as much as you want. Re the protein, that's a great question! I've read that we shouldn't eat a lot of protein but it never dawned on my why until you referred to HER2 as protein. DUH MARY! In either event, the idea is to 'starve the cancer'. Eating ketogenically does that AND any weight comes off FAST when in ketosis. You have to embrace feeling hungry. In keto diet, you eat mostly fats- good fats, a small % protein and even less than that of carbs. But fruit and veggies are carbs. The body turns simple carbs into sugar. Eating pasta and a slice of cake is sugar x sugar x sugar.

Darumama, u have plenty of time if you're feeling well enuf to reset you're system. I'm learning that we can't hold ourselves to too high of a standard while in treatment. We have to forgive ourselves bec treatment is HARSH! Chemo attacks the healthy cells too. Maybe try fasting before your next cycle. Then u can avoid the nuelstra shot, nausea and other fun stuff.

Not sure if I posted this already...

http://thetruthaboutcancer.com/quest/

http://www.newhealthguide.org/Low-Sugar-Fruits.htm...

Chloesmom

my sister is diabetic. She has been coaching me about carba and glycemic indexes. It amazes me how one fruit can be so different than another. I'm trying to stick with a low glycemic type of diet

vr423

any advice for sore mouth and lack of taste? Will this last the whole time on taxotere? It's a good thing I don't have an appetite ( 8 days post chemo)

live_deliciously

hi. Just had taxol dense dose #3 today. The iv went in and returned blood first time. No multiple pokes required today. So now just one more in two weeks and this chemo hell is done. The gentleman that had the reaction two weeks ago was in the chemo clinic again today. He is on weekly treatment and last week had no issues. And none again today. So glad for him. So many people with different kinds of cancers and different treatments. This cancer stuff is so crazy sick.

SugarCakes

The awful taste got worse for me with each treatment. With the first and second, things just tasted off but I still ate what I would normally eat. Starting with the 3rd, everything tasted horrible, even water! With the 3rd, 4th, and 5th treatment, I easily lost 10 lb within one week. My taste came back about 1.5 week in and I put most of the weight right back on.

All this talk of limiting sugar before and after diagnosis... I'm screwed and will continue to be unless I hire a nutritionists and cook

SugarCakes

Surgery set for July 6th... NSBMX with TE's for reconstruction. Funny, my first infusion was the Monday after my Super Bowl Party. Several other infusions followed "party" weekends. So now I have the July 4th celebration and my mom's bday. I like going into these things with a BANG! Lol

On a different note, enjoying Myrtle Beach this week with just my son and me. I'm spoiling the kid!

Ldavidson17

Headed to TCH # 5 out of 6 this morning.  Ready to get this one over with so only one left!  at MO apt yesterday she noticed swelling in my right foot and sent me for x-rays and an ultrasound.  Should be getting the results from her today while at chemo.  She's leaning towards either a fracture or blood clot... never thought I'd be hoping for a foot fracture!  good luck and positive thoughts to any other ladies headed to treatment today of fighting SEs!  Have a great day!

Jerseygirl927

just reading thru these posts and the sugar thing has me crashed as I know it feeds the cancer cells, but if the chemo is killing the cancer cells aren't we free of them? Or is this wishful thinking? This chemo mouth has me tasting nothing that tastes normal, sores are gone but taste is way off, milk taste like milk, water not, most fruits veggies don't taste like they should, been drinking the ensure for nutrition and health, I know it's got the chocolate and sugars but it does go down smooth and tastes like something. I was told to drink the refrigerated probiotics as they are returning your system to normal quicker than tablets . I hope it's true. As for the clariton, it worked for me, took it 3-4 days prior and 4-5 days after and almost no bone pain , like the first 3 shots, I only took it 1 or 2 days prior and after, total. Now I am well prepared, but still need to hydrate more so I can recover faster. As for protein, since we have the receptor protein, do you really think it lives on protein? Cause if it is, then we really are screwed because of the protein in just about everything, as well as the sugar in almost everything's? I have been living on eggs as this is least toxic on. My mouth. As for the small neuropathy I have now, in thumbs and toes, I am leaning toward asking to be done chemo and skip 5-6 because of the heart racing and numbness already and progressing thus far. No idea if I am being a wuss or not? Still scared and wante this so over. Going to hercepton infusion tomorrow. Will see if rash comes back too?

Dromedary

Beautiful photo Sugarcakes! Enjoy the break with your boy!

Water is what tastes the worst for me - can barely drink it and usually put a dash of apple juice in it just to make it more palatable. Suspect I'm using too much salt in an attempt to make things taste better, or just taste of something. Need to watch that.

Third DD Taxol started slow, thought the Claritin was working perhaps, but ultimately has not really been any better. Still feeling weird on day 7 after treatment, which is how it's been. Should be fine by tomorrow and have a reasonably clear week until the next - AND LAST one. Bring it on!

MaryJC

hi jersey, I'm thinking like you are that while we're on chemo, it's wiping out the cancer, sugar or not. Like you, chemo tongue made everything awful and could only taste sugary stuff- which btw exacerbate neuropathy! Water- awful! I went from drinking minimum 1/2 gallon a day to NONE and was drinking gingerale one week. Are you using biotein? That helped a little. ItalyChick said she scraped her tongue with coconut oil I believe. But once you're done with chemo avoiding sugars will be important. Consider eating ketogenic diet which is no sugar, low carb, low protein high good fats like avocado, salmon.

MaryJC

oh, did they give u benedryl before your herceptin only infusion

Jerseygirl927

no benedryl before herceptin, they think most of my side effects are minimal, but going in tomorrow for more talks with Drs nurse to discuss side effects, I had a list of 13 side effects that I consider darn annoying, let's see if benedryl is offered? I actually find that the baking soda, salt and water neutralizes the tongue until I eat, the biotine doesn't help ,nor does the first mouthwash with the lidocaine in cause that burns till it numbing effect kicks in.i have scraped the tongue, and periodi I swish with the cocon oil, it helps my acid reflux too. Any thoughts or info on the protein and herceptin? Gonna ask that one tomorrow too We need to keep each other up on all this to help us get thru this period in our lives. Feel better gals.

MaryJC

for my first herceptin only treatment onc gave me benedryl in case I had a reaction. Perhaps request/suggest it if not offered. Great that you have a consult and a list to discuss with them. Funny how they seem to minimize the things that agonize us. Keep us posted.

Meanwhile I'm at my follow up consult with my radiologist. Well waiting that is. Then sim is next. Need to reschedule bec I didn't realize I have infusion that day and a biopsy on that knot. BS said she thinks it's scar tissue. Mainly wants me to go bec they'll do ultrasound first n confirm its shrinking and therefore won't perform the biopsy. It def is shrinking as it's harder to find.

So girls are we gonna stay on this thread for rads and those having my, Or are we breaking up😞😩

Darumama

Here at oncologist's getting my chemo infusion. One more to go after today!😀 Ate real light.

MaryJC there is a board for summer 2015 rads, which I'm on, but I plan on sticking around here (for as long as the board is active) after my chemo ends.

My friend who did herceptin did Benadryl every time, but she's an allergic sort of person and it was a long time ago. BTW she is a great survivor story for you HER+ women. My friend had a tumor that was growing like crazy, but had a lot of trouble getting dx (doc told her it was mastitis). By the time she had surgery the tumor had engulfed half her breast. She was HER+ and herceptin was so new it wasn't covered by insurance. She almost put a second mortgage on her house to pay for it. It was supposed to be something crazy like $7000 per treatment. She and her oncologist really fought with the insurance company till finally insurance gave in and paid. She is now a 12 year survivor!