August 2013 Chemo Sisters

Shannah75

Hello Ladies-

I just had round 5 of TC today...starting to get VERY tired! I am having ankle and leg swelling with a lot of pain (my onc says the fluid is actually in my muscles), and I'm also very short of breath. My counts were good enough to have chemo, but since I already feel like this, I'm worried about what this round is going to do! I'm determined to keep a positive attitude, but I was just wondering if anybody else has had this, as well. Any suggestions? My doctor says keeping active will help move the fluid out of the muscles, but they're so sore, I can hardly bend or put on my own socks...my slippers are all I've been wearing for shoes. Stairs are also a BIG problem...feels like I've just run a marathon!

Martie1228

Cougar: Congratulations!!! 👯👶🎈

mankatostate

Leanne- I think that is when your white blood count is low. I guess there could be germs to make you sick on raw veggies but cooked they would be killed. I asked my doc about that and he said it's OK to eat them...so I haven't been as strict these last few rounds and so far have been OK.

Togetherness

Had my appointment with my ps yesterday. Fluid is building back up on right breast. He drained the fluid off and I feel better. Do not want to land back in the hospital. We are still on for Tuesday to do my implant surgery. I am so ready. Just hope there are no complications and it is an easy transfer. Want to get rid of this iron bra. Hope everyone is doing well or managing side effects. It is crappy that we have to go through this, but we all are very strong women and each of us have proven that. I wish nothing but the best for each of you through this journey.

TanyaF

Shannah- I had round 5 of TC last week and I also was experiencing a lot of swelling beforehand. It seems to always go down a bit after my infusion and it is in control right now 6 days later. For me that is mostly an issue later in the cycle. I was beat during the weekend, but have gotten my energy back since yesterday.

My mouth is another story. It always feels nasty And the increased sense of smell is pretty bad. My sink is the worst and my BF thinks it's funny because he can't smell anything. Even unscented lotion has a smell to me.

Hope everyone is hanging in there. We will survive this!

LeanneF

Thanks Mankato. That makes sense. I guess I am a little paranoid I may be doing something wrong. 

gavinsgrandma

Hi ladies I have not posted in quite awhile, I finished my 4th and final A/C 3 weeks ago and round 3&4 hit me pretty hard and I have had a hard time bouncing back. Then you add some family members into the mix that think I am selfish and inconsiderate about not doing more things with them, he'll I could not even get off the couch let alone go do things!!!!!! Needless to say my anxiety over all of that has taken it's toll on me over the last week or so. The SE that has persisted post A/C and even sent me to the ER yesterday has been very rapid heartbeat and Extreme shortness of breath upon any excursion at all, so if any of you experience that let your Dr know, they gave something at the hospital to slow my heart rate down and it really helped, I slept all night last a night and I think that was the 1st time since this nightmare started back in May😝 I am starting Taxotere this Friday, total of 12 treatments so I hope I can get through all of those unscathed. I wish everyone a SE free week or at least comfort and peace.

Shary

mankatostate

GG-Good to hear from you again! Sorry to hear though, that you had a rough couple of weeks! Glad for you getting a good night sleep that will make a world of difference. Prayers that you have another good night sleep tonight.

gavinsgrandma

Thank you Mankatostat, It is nice to be back😄 how are you coming along on your treatment plan? How many more do you have left to go? I am curious why you had to do chemo with no node involvement and no rads, I thought that was usually more the protocol with lumpectomy.

mankatostate

GG- I just had my last chemo a week ago Monday... yay so glad to be done with that! I had chemo because of my, age, grade 3, and size of tummor...or so I was told they were the reasons. My onco score came back medium low so I almost didn't do chemo. I guess now that it is over i am glad i did. I now move on to radiation. Have my first appointment on Friday.

RhodyMMM

Welcome back, GG! I am having the same issues you are. I have had febrile neutropenia after each cycle of A/C. The first time I did not have Neulasta, but I did the second time and still ended up in the hospital. the febrile neutropenia hit again one week after round 3, but this time they let me stay home with antibiotics and Tylenol. My counts were the absolute lowest this time, though--WBC 0.4 and neutrophils unmeasurable. Next time they will reduce my A/C dose by 25% to see if we can prevent it from happening again. I also found that round 3 side effects were the worst.....non-specific, just felt like I was run over by a freight train. Still really dragging now, my hemoglobin was also pretty low from the chemo (8.8). I hope the Taxotere goes better for you. Different side effects but, from what I undertand, not so severe and the neutropenia is also less of a problem. Weekly infusions sound wearing......but that is also what I will face after the A/C is done (12 weeks of Taxol). Glad to have you back, and I wish you well!

Martha

gavinsgrandma

Mankatostat, wow all of this stuff is so individualized, so happy for finishing chemo😄 That is fantastic, I can't wait until that is all behind me. Good luck at your appt and on starting your rads, do you know if you will do single beam rads or SAVI if you have heard of that?

Shary

LisaSp

GG: Hi and welcome back! I finished chemo too and have just started rads. Mankato, it's weird at first but it's so fast that it's surprising. Good luck to you Monday. At the moment, my major concern with rads is making it there on time!

We are all so individualized, it is interesting. Though the tumor was stage I, I had to have chemo because my Oncotype DX score was fairly high at 27 and because the tumor was progesterone negative. I'm having rads due to the lumpectomy.

Everyone have a fun Halloween and little to no side effects this week!

gavinsgrandma

Lisa, congrats on finishing your chemo, we really are making progress aren't we😄 Also goo luck on your rads and I am sure you will get there on time, that will be an interesting time for me owing to the fact that where I go for all my treatment is 3 hours away, I will have to be away from home for 6 weeks.😝 Not sure how that will work out but I won't worry about that today, we leave for Carson City tomorrow and I start the 1st of my 12 Taxotere chemos. I figure if I can dance with the devil "red devil that is" I can do anything!!!!!!!! Happy Halloween all and be safe

lighthouselady

GG - Wow - how on earth will you be away for 6 weeks??? That stinks! My surgeons are all in Dallas (3 hours away) but luckily I have a cancer center 5 minutes from my house where I am doing chemo & will have rads.

So...a week after my first taxol and I'm feeling pretty good. Saturday night through Tuesday I was SO exhausted.... like extreme fatigue I've never felt before. And I had awful head to toe muscle and bone aches that my pain meds hardly touched. That seems to be gone now, though, and maybe I'll have a week of normal before my next one!

Martha - my hemoglobin is the same as yours. I started out at 13.9 and now after 5 rounds of chemo it's hovering right around where yours is. My MO said if it gets below 8.0 we'll have to think transfusion. Booo. I don't see him or have labs until next Thurs which is supposed to be taxol #2 so we'll see.

gavinsgrandma

Thank you again for welcoming me back, I got so lost here awhile back ago I could not keep up with anything, probably chemo brain😝 Martha we really did have a lot of the same issues with big Red, my WBC got critically low every time so I had to take antibiotics after every treatment. be kind to yourself and make sure family does not expect to much from you after # 4, 3&4 hit me the hardest and I still have not bounced back completely yet. Their is a blog called Linda4health and she has a good article on " Whinning through Adrymiacin " it so very informative, if you cannot find it I will post the link. When do you go for # 4?

Lighthouse, yea all my treatments and my rads will be 3 hours away, we are leaving today and tomorrow I start the 1st of my 12 Taxotere, phase 2 here I come.

Lisa and mankatostat, I hope you ladies are having a great day so far, 1 more cup of coffee and then get ready to hit the road, I will check in later. Blessings and peace to all of us on this bumpy road and Happy Halloween to all.

Shary

TanyaF

GG-good luck with the next round!

This last infusion is really hitting me hard. It started out pretty much the same, but has been getting worse the past 4 days when it usually gets better! My mouth is still nasty and very little tastes good. The neuropathy is much worse. It used to hover in my fingertips, but has spread to my whole hand. My legs and feet flare up as well. Oh how I hope this is temporary! I took a walk yesterday and that wiped me out. I also have problems sleeping. I am tired though. I keep telling myself that this will pass.

mankatostate

Tanya- are you able to get any PT for your neuropathy? They ordered up some for me when I just started to have a little tingling in my fingers and toes. I am not really sure how much help it is but at least I feel like I am doing something about it. I am sorry yours is getting worse. Are you done or do you still have another round to go thru? I can relate to the wiped out feeling. I just walked to the mailbox and wanted to rest! My sleep is not the same as before but over time it's getting better. Hope yours gets better soon.

TanyaF

manka- I didn't know there was PT for this! I guess I'll wait and see if it gets better/worse.

I talked to MO yesterday and he decided to end my chemo treatment. I am glad about this I made a radiation appointment. I had an initial consult back in July so I am hoping this is not the same and that I get started since it is not until Nov. 21. Until then I will try to get through these SE and then get started on some sort of exercise program to get rid of the pounds I gained during chemo. It is a relief to know I am done with this phase.

gavinsgrandma

Good morning ladies, I am sorry for those suffering from SE'S, Tanya, congrats on being done with chemo maybe now going in a new direction will be a positive. I was supposed to start Taxotere today but MO office called yesterday and said no chemo today, my ANC is to low and my immune system is just not strong enough for chemo today, so hopefully I can start next Friday. Wishing everyone a nice Friday.

Shary

mankatostate

Tanya- yay for being done! Are you good with cutting treatment short? You must of gotten at least 4 treatments in didn't you? I couldn't of imagined going longer myself, but I guess some how we find the strength to do what we need yo do.

I just got back from my radiologist visit. I will have to do 25 treatments. Not too bad as I was expecting at least 30. I just my be done by Christmas!

So here is my question did you all get a PET scan or Cat scan? My onco doc ordered one for me in a week. Now Rads doc says to wait until rads are over. He says there is no point in doing scan now because not much can be done during treatment and it would mess things up for rads if they saw something. Or else he says do scan but then we need to wait for results before treatment. Which would delay rads 2-3 weeks. I don't want to do thst if I don't have to. He says too many false positives that could stop treatments. He is a Mayo clinic doc vs my other doc not being one so I tend to trust his experience. I had clear margins no lymph involvement... would welcome thoughts do you think it's bad to wait for pet/cat scan until Jan after all is over?

Anonymous

Hi, 4AC done, 6 taxol of 12 done. 6 more to go. Hair growing during taxol. Thats nice. Scared shitless thinking that progression is inevitable for everyone. Still shocked about Julie. Hope you are all feeling better than me.

V

ForMyGranddaughter

Hi Everyone!

My brows have thinned but are still enough; I've always had thin brows so no one probably notices, plus my wig has a bang.

I took the Look Good, Feel Better class but still can't draw brows; so I mostly leave them alone.

My lashes may have thinned but not as much as the brows; IMO they still look good . . . I don't use any mascara.

I'm starting to feel like myself again!

In a few weeks, I will go to Mary's Place at the Sea for 2 days of pampering; I'm really looking forward to it. The only thing you have to spend is $10 if you want dinner. A spa weekend for $20 is right up my alley! I'm going with a woman I met who help me a lot. On this weekend we will plan to start a in-person support group.

Much success to you all. For those of you still getting treatment, hang in there . . . the best is yet to come!

RhodyMMM

Hi V, how are you doing with the Taxol compared to the AC? I am going for my fourth and final AC on Thursday (and REALLY not looking forward to it; #3 was brutal). Hoping that the Taxol will be easier, especially since it will be weekly. Wishing you the best!

Martha

Anonymous

hi Martha, AC for me was terrible especially numbers 3&4. Taxol is a gift in comparison. I have developed the bad taste and extreme exhaustion but otherwise have few symptoms. Nothing like AC.

lighthouselady

Martha - I have taxol #2 this week. My worst SEs have been (like HVV said) extreme exhaustion, and I had major aches from head to toe on days 3-7. No nausea (at least with my 1st taxol tx), and the yuck taste is pretty much gone. My taste buds are still off, and I have a sore spot on my tongue that keeps reappearing, but nothing like the dirty sock taste/yucky feeling I had 24/7 with AC.

beeve

I'm 1 week past my 5/6 chemo infusions and my side effects are not the same as anyone's really; it's true that each of us experiences a unique but in many ways similar occurrence. Nausea has always been at a minimum and I don't have any of the neuropathy or other nerve problems y'all have, I don't even know what those words mean. My taste and smell has stayed fine but I crave the freshest of foods, like apples and other vegetables but I'm pretty sure that's because my beloved, though a great spouse, is hopeless in the kitchen so we've been eating pretty much crap food. I cook when I can and we go out a lot but I still miss my own home made food.

Fatigue, yes definitely, that one I know all too well. Lately, the major side effect would be a killer headache and generally feeling like crap - like my blood has been replaced with a chemical sludge. Are the rest of y'all feeling it that way? My MO says chemo is cumulative and that's easy to believe, I can't wait to be done with the Taxol and Carboplantin (the Herceptin continues for months).

Manko - as to pet scans and the like they put m through all that prior to my surgery or just after, can't remember, but the scans were clean as far as cancer was concerned. I asked my MO if they would scan me again later and he said no, just look for red flags like blood work, pain or I can't remember what the third was - any masses I suppose. I wasn't thrilled not to be fully checked on later but I can always insist or go for a second opinion. I also have a pap smear in my future, I know it's best not to do that during chemo so if I check it a few months later they'll see if there are any other problems brewing.

I'm tired of feeling like a toxic waste dump, that's the best way to describe how my body feels. Add the headache...

Togetherness

Hello I am 31/2 weeks post chemo and still feel like crap. I am having terrible muscle pain and extreme fatigued. Just wanted to know if anyone knows how long it takes to get this crap out of your system. Was thinking about asking MO about PT. Has anyone done anything about the residual side effects.

On a happy note I did get my TE taken out yesterday and implants put in. Implants feel so much better than those TE. I have drsins due to the the infection i had in my right breast. Still in pain but hey is as only been one day. I go to PS today for the reveal. I hope I like what I see.

Hope everyone one is managing side effects or getting on with there new normal life!!

LisaSp

Togetherness: Definitely talk to your MO and I say go for PT. SEs after treatment definitely can be debilitating. I am doing pretty well one month out of treatment but I still have a lot of fatigue which I have to work on.

Mankatostate: Don't let the scans delay your rad treatment. I just went to a conference on survivorship put on by my hospital (Johns Hopkins) and they said no patient should get those scans as follow up unless they have metastatic cancer. This is according to the latest American Society of Clinical Oncology clinical practice guidelines. Look at ASCO's Cancer.net website for a summary: 'What to Know: ASCO's Guidelines.'

RhodyMMM

Wish me luck...#4 A/C tomorrow. Praying that I don't end up with profound neutropenia and fevers AGAIN. Just want to get through this one and move on to the next phase. They say the 3rd and 4th treatments are the worst. The third was brutal, I just hope the dose reduction (25% they say) for this time will help. My husband and my friends say "just think this is the last" but they just don't understand how horrible it makes you feel......

Sorry for whining, I generally try to be positive. But I am so not looking forward to this....hopefully in a few days I can get back to a positive outlook!

Martha