TRIPLE POSITIVE GROUP

Tree27

How is radiation going? Is the radiation being done in the prone position or on your back?

CassieCat

I had Herceptin with my 6 chemos and have had one Herceptin-only, that they ran over 60 minutes. I haven't had any arthritis-type pains at all. I did have muscle pain though, during chemo, and I figured that was either the C or the T. Now that I'm done with chemo I don't have those aches anymore.

SpecialK

knm - I got Herceptin over 90 minutes with chemo, it was the first H only infusion that they did in 30, and I had intractable pain.  I asked it to be done over 90 minutes starting with the next and had no more issues.

rose - you will probably have some muscle tightness and aching leftover from chemo for 6-8 weeks, then you should see that dissipate.  You may currently be experiencing a convergence of end of chemo SE and new Herceptin only SE, but you may see a reduction in the muscle pain pretty soon.  Hope so.

Mommato3

I'm still doing my Herceptin infusions at 30 mins. Not sure I want to spend an extra hour there. I have stiffness when I get up from sitting or first thing in the morning. My last chemo was in November 18th so I don't think it's leftover from that, is it? I'm exercising about 60 mins a day, 6 days a week (3.5-4.5 MPH jog/walk). Not only do I still have stiffness, the damn scale hasn't moved at all!!! Is that normal? Is it from menopause or Tamox? Will I ever lose this weight??? On a positive note, my hair is coming in pretty good. Thick but a little too curly and fluffy. Did I also mention it's the wrong color?

knmtwins

Mommato3 - remember muscle weighs more than fat, maybe the weight is muscle. For me, not exercising regularly, but SAHM to 3 kids, so just not being chemo sick has increased my level of exercise, I was 10lbs lighter on 1/28 than I was all during chemo. I'm not on Tamox yet, my MO will start it AFTER Herceptin is completed, but still in chemopause. I have a full head of baby hair, soft like a baby's too, white and black patches. I've been dying it for over 20 years, but before that, it was brown... Last chemo was 10/28/14.

Rose0766

thanks, Specialk, I hope it's left over from chemo too. My patience has been wearing thin lately. This whole Cancer killing process is taking too long! I know it's a process, and things are moving as well as I could have hoped, but it doesn't mean I have to like it. The 15 pound weight gain in the last 3 weeks is for me the most frustrating thing. MO says its from the chemo, I accept that, but when does it start coming off? I'm overweight to begin with, and was losing weight prior to chemo/diagnosis. I'm trying to move more now that I feel up to it, but this muscle achiness is for the birds! Now with surgery coming up at the end of the month, my activity level will go down again. What a roller coaster

Jumpship

I'm with you Rose. I had two days this cycle where I gained 5 pounds. I'm swollen, my leg muscles hurt and my mouth tastes bad. Two more cycles to go.....hope I can make it.

knmtwins

I finished chemo TCHP on 10/28, had BMx on 12/2 and when I was weighed a week and a half ago, I had lost 10lbs. I stayed the same weight all chemo, with the exception of the 5 lb weight loss that would happen if I had bad lower GI, but would always be within a pound, on chemo day. I think whatever weird weight (probably water weight) we get during chemo, just 'fell off', and has been off for the last 10 days, so I'm thinking it is gone. YEA!!!! BTW after your last cycle, once that bad taste goes away, it doesn't come back... YEA!!! It is a marathon not a sprint, and you will make it.

SpecialK

If you have a rapid gain it is most likely fluid retention and some people have used diuretics - myself included.  Always mention this to your MOs though - could be issues with Herceptin and heart function, or could also be kidney function issues from chemo.  I stayed on the low dose diuretic for about a year after chemo was done, then weaned off.  I did not lose the chemo weight, then gained on hormonal therapy too - even exercising and eating sensibly.  I finally had to try an anti-inflammatory diet (elimination diet) to take off that 20 pound gain.  I now weight what I did prior to diagnosis.

formydaughter

my weight gain on chemo was from the steroids. I gained 20. Once done with TC and onto maintenance Herceptin, at first I could not lose a pound. Turns out they were still giving me steroids as a premed. I asked to end them and my MO agreed. After this, it took time - 3 mos. before I started losing. But then the stepped up exercise (yoga and walking) and small portion diet (primarily organic veggies and green drink smoothies) worked. I've lost 30. It came off all at once and was needed (I have more to go) so I'm hoping I can maintain. I've been loosely working on an elimination diet too, to be more healthy and take out inflammatory foods. Special K, you inspire me!

chrissie29

After my diagnosis, I started following the diet that I followed when I had gestational diabetes (eating carbohydrate controlled meals every 2-3 hours) plus cut way down on fat and sugar and added tons of veggies.  When I was on this diet when pregnant, the weight just fell off, and the same happened after my diagnosis.  I lost over 20 pounds while on chemo just doing this and now have plateaued at my ideal body weight still doing the same diet.  I do have a big love of chocolate so my sweet treat would be a piece of dark chocolate-I have now found a 99% cocoa bar so the entire bar has only 1gram of sugar.  For those struggling with the weight gain, do you have access to a dietitian at your Cancer Center?  I met with one just today to see if I needed any supplements or additions to my diet and to talk about diet to prevent recurrence.  I found it to be very helpful.

rleepac

I'm terrified of weight gain from steroids! I had gastric bypass surgery in 2007 and I've been able to keep an ideal weight (actually on the low end) since surgery. I haven't started chemo yet but the weight gain scares me more than hair loss, nausea, constipation, diarrhea, or fatigue. I know it sounds superficial but when you spend you life obese and then take drastic measures to fix it - you don't want sucky cancer to ruin all your hard work and undo everything. Maybe it is superficial but it's important to me.

knmtwins

rleepac - AMAZING since 2007... you will be ok. Although I popped around, every 3rd week, when ready for chemo, I was within 1/2 pound of what I had been before the previous chemo. Sucky cancer won't ruin your hard work. My second opinion onco, told me, this is not the time to worry about weight, keep it where you are or a little above, you need the strength for what you are about to go through. As to superficial, any complaining when chemo is fighting to beat your sucky cancer is superficial... hence, we all are superficial. Each of us has different concerns, and as someone who has been through it, guess what, those concerns change.

Rose0766

rleepac, it's not superficial at all! I lost70 pounds, it took me 10 yrs of ups and downs, but I finally kept it off and now with this Cancer treatment, I've gained the 15. I'm trying to get back on track now that my taste buds are coming back. I understand how you feel completely. I lost the weight on the glycemic Index diet.

Sounds like there is some hope for losing it, just got to stay focused, I'm sure my obesity is part of what got me here in the first place. I have no family history of breast cancer, am negative for gene mutations, I don't drink or smoke, so my weight has to be part of it.

I have to read up on the anti-inflammatory diet.

CassieCat

For what it's worth I didn't gain any weight during or after chemo. It fluctuated, of course, but I'm still right around my usual weight, give or take a pound or two on any given day. I was only on steroids for three days every three weeks. After surgery I retained fluid, but that's all gone too.

As for worrying- losing my hair was really hard on me. Superficial as well, I know, but difficult nonetheless. It's coming in now, but I went from long, thick hair to basically nothing. I loved my hair. I'm guessing it'll be a good 2.5-3 years before I get my length back.

Mommato3

Rleepac, try not to worry too much. Not everybody gains weight while on chemo.

My scale finally moved 2 lbs. I think I was pushing myself too hard and my body was fighting back. We were in Chicago this weekend so I didn't exercise. The scale has gone down the last two days. Maybe I need to go to every other day for an hour instead of every day. I'm glad to hear others were able to finally lose the weight. That encourages me

rleepac

Definitely some encouraging comments! I've had so many people (who haven't had cancer/chemo and aren't my doctor) tell me to gain weight because I'll lose too much during chemo. I just smile and nod and say 'yes, I suppose I'll need the strength' but down inside I'm saying HECK NO, I'm not gaining weight on purpose!!! If my doc tells me I'm too thin, then I'll do something about it. Otherwise, I'm hoping to maintain where I'm at. Sounds like that will be possible and even if there's a little gain, it should come off after treatment. I think I can manage that.

lago

I gained around 10+ on chemo. Most of it was water retention. I lost it all after chemo when I went back to my regular eating and exercise habits.

windgirl

I gained about 8-9 pounds during chemo which was all water and fell off in about 1.5 months pfc. I ate normal during chemo and snacked a lot. When you are home all day and have a bad taste in mouth and food itself still tastes good you tend to eat to overcome the bad taste even for a few minutes

I am back to my prechemo weight, which was actually above my ideal weight by about 10 pounds. I will continue to eat normal until I finish rads. I am planning on reducing my portions a bit and working out once rads are done.

Your body needs a lot of nutrition and protein during this time so eat good things snack on what makes you happy and don't worry about the scale.

If you do end up swelling in your lower legs and feet like I did towards the end, consider wearing compression socks if you will be on your feet a lot or sitting at work in the same position for hours.

runningcello

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@PMR, I would recommend for your future infusions to ask for an IV of fluids when you go to get your nulesta shot 1/2 days after chemo. It works wonders and will be able to combat the side effects of chemo before they completely take over. I would also recommend the doctor schedule you for potassium or whichever thing you're low on when you're getting these fluids and the nulesta shot.

TCH never got better as the treatments went on simply because your body had no time to recover. I threw up a significant amount and had very bad diarrhea that got worse and worse after each treatment. NOTHING will taste good but if anything tastrs good at all .. Run and eat it. I'm sorry I don't have any comforting words ..

debiann

My weight fluctuated during chemo, I'd lose as much as 7 pounds the week following tx, but it always bounced back to normal by the next tx. I probably could have easily lost some weight during this time, but I was going to have DIEP recon and needed my belly fat so I made myself eat. I've lost 10 pounds since surgery and would love to lose 20 more. Maybe when PA defrosts and I can get outside and be more active that will happen.

ElaineTherese

I lost 10 pounds during chemo, but it was mostly due to a nasty stomach virus that I caught after Taxol #11. Taxol killed my taste buds except when it came to sweet things. I remember eating some cookies but also eating lots of berries and fruit.

ElaineTherese

Looks like MO finally got around to digesting the SOFT study results.... She's pushing me to do an AI instead of Tamoxifen, even thought I'm technically pre-menopausal (though in chemopause). The problem is she talked so fast that I missed the names of the meds I'll be taking. (And, I've had a lot going on at home with one of my sons with autism so I didn't ask her to repeat herself.) I guess I'll have to call her nurse.

Meanwhile, my LX boob is still swollen -- MO thinks it's due to fluid buildup. Maybe, I should have left the drain in longer? I left a message with the surgeon's office; I wonder if they'll want to drain more or just wait to see if the fluid is absorbed.

Mommato3

Elainetherese, are you going to do OS too? Can I ask how old you are. I'm 42 now. I've had this discussion with my MO. Right now she thinks Tamox is good because I'm in chemo pause. That will change if I come out though. I'm not having any SE from Tamox so I hesitate to switch meds.

ElaineTherese

Mommato3,

I will be getting an ovulation suppressor, if that's what OS stands for. I just forget which one. It's not Lupron because my health insurance doesn't cover that yet. It's a monthly shot of some kind. I'm 47. We did talk about the fact that AI's can have a negative impact on bone density, and discussed what she recommends for that.

PMR53

Runningcello

I think that's a great idea. On round #3 I will ask for fluids with Neulasta. I think it should help combat the nausea and dehydration. Did you have 4 or 6 TCH?

Patty

formydaughter

patty, I was supposed to have 6 of TCHP but only made it through 4. I kept getting too dehydrated and was hospitalized several times for it. I wholeheartedly agree that if you can stay ahead of it with fluids, it's a good plan. I got my fluids but it was always too late. You will fare better I do believe!!

rleepac

I know you directed that at Patty but it made me realize that I didn't think about dehydration. I'm very prone to getting dehydrated and have had several visits to the ER (not recently thank God) for it. I'm supposed to start in a week or two and I think I'll warn my MO and nursing staff and see if they can 'tank me up' with fluids each time I go for treatment!

CassieCat

Being well-hydrated is so important. If we can't do it ourselves then getting extra fluids via IV is key.

I'm 44 (almost) and wasn't close to menopause as far as I could tell at DX, and right now MO is saying Tamoxifen for me. I'm still in chemopause, but I don't know how that affects the decision (or even if it does). I won't start until after radiation, so I've got another 6-7 weeks at least.

debiann

Rleepac, you can also asked to be scheduled for fluids a couple days after tx too. I had trouble with dehydration. I drank and drank and drank, but peed it right out and it wasn't getting absorbed and used the way it was supposed to be. Round three I ended up in the ER, after that they just scheduled me for fluids in advance. Round 5 I had to get fluids twice.