Calling all TNs

FrancesC

HI Heather - you are not alone about the surgery.  I was a wreck when I had my lumpectomy on 23 June.  Shivering and freaking out when I was in the trolley waiting just outside the op theatre.  The nurse came in and took out my case file which was at least 2 inches thick.  On friday 8 July I went in for my port insertion and again I was shivering with fear and then the nurse took out my thick case file again and she counted --- 9 operations done so far.  What I am trying to get at is I will still shudder with fear even after having gone through so many surgeries in my life.  I was crying away even after the surgery because of the pain.

I figure we are all humans after all.  Cry if we need to, its a good relief. 

mccrimmon324

inmate, so happy to hear it hasn't spread!

gillyone

Inmate - great news!

In defense of NEULASTA - I had it after every DD AC/T, and did not feel any SEs from it whatsoever. Plenty of other stuff going on, but nothing from the neulasta shot. Like everything else, we all react differently, and I wouldn't have been able to get through DD tx without it. So ladies - don't be put off by the idea of it because of what you hear from those who had a bad reaction to neulasta. Remember -for many others it was fine. Just sayin".

Babs37

My DH had to give me my Neupogen (same as Neulasta) shots for 7 days in a row, 3 days after every AC treatment! I couldn't stand the little needle poking my skin because like Titan said, my skin hurted so bad and everywhere between my waist and my nose was aching. It lastest for about 3 days and then I was better. I was so relieved when that part of treatment was over.

inmate- Yeh for no spread!!! Good luck with surgery and "YES YOU CAN DO THIS!!!" 

Have a great week-end everyone

Huskerkkc

I was part of a clinical trial and Neulasta was part of the deal. I did the Claritin/Aleve routine and did not think it helped, but maybe if I hadn't it would have been worse! After the 2nd Neulasta shot/chemo treatment, my WBC's were very high. To me, this meant that not only was the Neulasta working but my own immune system was kicking in pretty well on it's own. So prior to chemo #3, I asked if a half-dose was possible (I couldn't eliminate it entirely because of the trial requirements). After checking the protocols, it was allowed. Although I was still miserable on days 3-5, it was much less than the first two times and my WBC's held their own, remaining within the normal range every week. The onc told me only 5-6 patients had ever done the half-dose and he was excited to see how I did. (He's a researcher as well, so he was always looking for something that could be part of a study!) The down-side was that the half-dose has a very short shelf life, so it could not be saved for my next treatment. It went down the drain. And I was charged the full amount (thank god for insurance, because that shot is EXPENSIVE!) But it was one small thing I felt like I had some control of-even if he'd said no, I was glad I asked. Don't be afraid to speak up. Some oncs give it only when counts are low, some do it as a matter of routine, some do the Neutrogen (daily rather than one time dose), so obviously there differences in care. And we all have different immune systems. I never once was nauseous. Ever. I can take pain over throwing up most any day. I was so worried about that. I have to prescriptions of anti-nausea meds that I have never opened. But glad I had it in case I needed it.

Luah

Yup, I'm another with virtually no effects from neulasta, go figure. I had to give the shot to myself which was anxiety-producing the first time, but not so bad at all afterward. Without neulasta I could not have done dose dense AC, and dose dense has been shown to be more effective, so I'm grateful for it.

inmate: So happy for you, that is fantastic news!!!  

OBXK

Stupidboob - the meds can cause you to feel very fatigued and have shortness of breath. I remember the climb to my second floor, feeling like Everest! I use to go into an awful crying jag, around chemo time. My doc dad, said it was a result of the steroids. I think they cause fluid retention, and press on areas of the brain, causing depression. I felt netter knowing it was my brain on drugs. To keep my gut from hurting, I took a stool softener, everyday for a week after chemo. Zofran really caused GI distress, so I switched to fenegren (sp?) I also take Ativan once a day.



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My neuropathy is awful today! It really worries me, because I fear that I will never be able to take a taxane or PARP due to it. Borrowing trouble...

Sugar77

I was fortunate to have no problems with Neulasta. I took Claritin for five days and I think it helped. 

mamachick

Took Claritin and Aleve also, not sure how much good it did, but once they cut my dose in half it was sooo much better and I never had any illnesses during chemo, so I think it helped.

OBXK- I took phenergan and ativan and it helped a lot.  I also found that Prilosec helped also. My neuropathy mostly faded after I finished treatment.  Just a small strange feeling in my toes and only at night, it seems to be fading weekly.

Inmate-yea!  for good results.

Have a great night everyone!

Rebas2

Stupidboob -Hi, I finished my chemo last January 12th and I drank so much water I thought I was going to float away.  My nausea medicine worked well for me, I only took it a few times a day for the first couple of days, it helped me sleep too.  I had to force myself to eat even if it was only a few bites of something bland for a whole meal.  By day three I was usually able to eat better.  Keep your chin up and get through this.  I told myself that is one treatment I won't ever have to do again and I just kept counting them down.  I remember I couldn't wait to get to the single digits then I finally finished them.  YOU CAN DO THIS!!  We are all in it together :-)  Many smiles and good thoughts are being sent your way!  Hugs help too.      I too had the nasty AC and crying uncontrollably.  I couldn't walk far at all without being out of breath.  You let yourself cry and think of it as cleansing yourself.  It stinks!!  Get through this.  I went to a look good feel good thing sponsored by ACS.  It was nice to get out among people that felt like I did.  So many emotions to deal with, what a journey to travel.  I'm sending you well wishes :-)

Rebas2

TNBCRuth--NO MATTER what people say know in your heart you did a GREAT job!!  We all heal and deal with this in our own ways and what a great thing to get to connect with each other through here.  You are here and that says it all.  Whether I feel up or down I know I am still feeling and glad to be here    :-)  I'm glad you are all here too!!  Hugs for us all :-)

Rebas2

GuyGirl and NavyMom, I too thought/think I am in menopause but after reading your posts I wonder if I am following you.  I recently talked to my family doctor about having hot flashes and he is scheduling a blood test to see if it is menopause.  What a strange journey this is. 

Stupidboob

I have alot of catching up to do (later) but I wanted to ask you all how your spouses/so handled things with you?

Titan

My onc pretty much told me that chemo would throw me into menopause..chiefly because of my age at diagnosis...(49)...

It is truly amazing how everyone has different side effects from chemo/neulasta/rads. I too had no nausea at all..

Someone here was concerned about starting taxol..understand your feelings...you make it through AC..and now there is something new to deal with...I heard that taxol was easier than AC...I didn't find it easier necessarily..just different...it takes alot longer to infuse...they will watch you closely the first time..they also will take your blood pressure several times during the infusion...you don't have to take the anti-nausea stuff which is good...EMEND is expensive...!..I guess the best thing about taxol meant that I was that closer to being DONE with chemo..that alone helped mentally.

Yay inmate!  Awesome news for you! 

Titan

A friend of mine's mom just was diagnosed with BC..had a masectomy.  She is 69 years old..the sentinal node was cancerous...She is stage 2B.  At first my friend said that her mom didn't have to have chemo..but now she is seeing the onc. next week...I don't know if she is tn or not...

Do we have anyone on this thread that is around that age with about the same diagnosis?  If so..what treatment did you have?  My friend wants me to compile a list of questions before her mom's appt.

Rebas2

Stupidboob, It's me again - I have heard differant sides to how spouses handle what we have to go through.  Some have not handled it well at all.  I think communication is the key.  My story is we cried and laughed together.  We still do.

Titan

This is totally off topic..but for you ladies that "farm" on facebook..if you need neighbors PM me your facebook name and we can be "friends" and "neighbors"...ha ha...I'm friends with several people here on BCO...it's fun to keep in touch with each other that way also..

I was lucky with my DH during my treatments...he was very, very good to me..My DH can be very reserved at times...he had to actually come out and FEEL...I complained and cried only to him...he was very patient with me...I used to whine the day b-4 chemo..telling him that I was going to quit..and he would say..ok..you can quit if you want too...of course I didn't..but I liked knowing that yes..i could quit if I wanted too...

FrancesC

Can anyone help me with this:  My port was inserted on Friday and the area is still hurting me badly.. Seems the pain isnt subsiding but actually getting more painful.  When will it go away?

tnbcRuth

Frances, you need to call and let them know.  The pain should be subsiding, not increasing.

Thank you for the kind words about my 'success' with this b***ch of a disease.  I wasn't offended, just frustrated! Nine months later and my bone marrow is doing a crummy job of keeping me going.  My blood counts are 'normal', but like .01 above 'low' on 6 components.  I'm getting B12 shots and lots of other things...I just can't contribute any more time to this mess!!! 

Please keep taking the Neulesta!  I ended up in the hospital the day after my first chemo and my onc (who I fired) didn't come and instruct them to give me the injection, so I ended up with .5...the 'lowest they had ever seen in a patient'.  Subsequent injections weren't bad, but only if I took the Claritin and Aleve.

The new meds really help with the fasciitus and the calf burning.  My temp seems to be regulating itself with the help of the adrenal recovery pill.  I can always tell when it drops, and I go outside where the 96* Florida heat does its thing! 

mccrimmon324

ruth, what chemo were you on?  I'm on TAC X 6. 

slcst12

Hi girls...it's been ages since I posted. I am sorry I don't keep up well with this forum (it moves so fast, I feel like there's 3 or 4 new pages every day!)

I survived chemo and just finished up rads on Friday.

28 whole breast and 5 boost with bolus.

I'm alive. I'm grateful. I'm tired.

Anyway-I am 10 wks PFC and have some hair coming back.

I'm trying to look forward to the future and make those small incremental changes in my diet. I love love love sweets so that's tough for me. I ended up gaining about 5 lbs overall on chemo (up to 120 lb--I'm 5'5" so I'm not carrying it all that well)

But I'm trying to cut out the high fat sweets to hopefully help prevent recurrence.

I have follow ups with the BS and the MO next week. I can't believe it's been 6 mos and 3 mos respectively since I saw them...

On the chemopause. I'm still in it. It still sucks. I'm 38.

Oh and lastly, TITAN: on the 'choosing to do treatment', that is some of the best advice I'd ever heard. I belive you told me on this forum, and a friend IRL who has ovarian cancer also told me. It's our decision to deal with treatment and take treatment, and remembering that throughout the course of my treatment plan was instrumental for me; to remind me that I was in control of how I chose to fight this disease. Thank you so much for being here girls!!

tnbcRuth

I had one clinical trial (hi dosage) of Avastin and Taxotere.  I had pCR (pathogenic complete response-tumor was gone).   I opted out and didn't finish the trial.  4 months later (surgery, etc) I had 3 rounds (out of recommended 6) of Adriamyacin and Cytoxin.  Couldn't do any more because it was literally killing/poisoning me.  That's why I sometimes post that its your choice to continue treatment or not.  In my particular case, I should have stopped after that one.  I don't think its going to make any difference at all in the long run.  I could have survived the 1st chemo and be back to 'normal' now instead of sitting around sick/unemployed/alone for 9 months.  In case of mets, I won't be having any more treatments...quality vs quantity of life  Maybe I'm more disappointed in my 'recovery'. I am grateful to have these forums to bounce opinions and emotions off people in the same situation.  My friends here are 'over it'.    

Thank you Rebas2  It wasn't fun as you all know!  Slcst- I remember your bracelets!  Yea for you!

Titan

Slcst..I'm so glad that you are done..and ALIVE...good stuff girl!

rella40

Hi everyone,

Just want to say hi and let you know I am scheduled for a CT of the neck and chest, MRI of liver and brain.  Results on Tuesday.  I will try to post tomorrow.  We all know about "scanxiety" (sp?), so not too much to say tonight.  We did go camping, had a great time for the most part.....it was hard to stay completely out of the sun, we fished alot.  Caught a beauty bass, biggest one in MY life...lol.  Felt good to relax, even thought MIL went in the hospital the afternoon before we left, and insisted no one tell us--she didn't want to ruin our vacation. Turns out to be colitis, so as she was resting comfortably, we went ahead with our plans.----well, I guesss I did have a little to say.  Now off to bed, on the road at 7 am!  Best to all.

gillyone

Rella - we'll be thinking of you tomorrow. Hope all goes smoothly.

MBJ

tnbcRuth:  Wow, those pills work fast!  That is so good to hear!

slcst:  Congratulations on being done!!!

Inmate:  So glad it isn't mets, it's treatable and you can breath a sigh of relief.  Come here and bitch and moan about the chemo.

FrancesC

Hi all, just to share my experience in the chair today.  I was all tensed up and fearful. The nurses are excellent and they tried to keep me calm.  I have a bad swelling where port was placed and the RN had problems accessing it.  It was very painful and it took her a long time to finally locate it and she had to jab it hard through the swelling.  I did the cold caps too.  It was cold but bearable.  Hope it helps.

The chemo drugs are ok, I didnt feel them going in and rested the entire time.  I am now home and boy, I was hungry and gobbled down a bowl of rice with fish cooked in yogurt and lemon grass.  Now going to drink lots of fluids and rest.  

All the best to all going for your treatments.  I will be thinking of you.

Paintingmywaythru

Frances did they have the cold caps there?

Not at the center I went to in Boston....wish I could have tried them for my hair...vanity strikes here is a big way, but I will deal with whatever. Everyone here shows me how strong they are and how they make it through.

Paintingmywaythru

Frances did they have the cold caps there?

Not at the center I went to in Boston....wish I could have tried them for my hair...vanity strikes here is a big way, but I will deal with whatever. Everyone here shows me how strong they are and how they make it through.

Suze35

I apologize in advance if I miss responding to someone...



Inmate - so happy to hear "no mets". Boy do I know the relief from that!! Now you can focus on being cured .



Rella - best wishes for your scans today...I'm so glad you went and had a good time. I adore fishing, so I'm jealous of that bass!!



slcst - yay on finished. And YAYYY on living! So good to hear .




tnbcRuth - I am sorry you continue to have such side effects. It is the side of chemo that I know "we" (collectively) don't talk about - we are supposed to just be happy to be alive, and accept any consequences. While it is true, it doesn't - and shouldn't - negate just how we remain affected sometimes. I continue to have head issues - headaches, "chemo-brain," fuzziness, hot flashes, achy old joints, etc. I've had plenty of scans, no causes that we can see. If this is permanent, well, I'm happy to be alive but it sucks. It isn't what normal was for me, and the thought that it may never be again stinks. Thinking of you...



Frances - hang in there, chemo days are so stressful. That stinks about the port - did they give you lidocaine cream to numb it before you went in? If not, ask if they can - it is called EMLA here in the states. This way you don't feel the stick. I'm glad you got through the first day without too many other problems .



painting - I'm surprised Boston didn't have cold caps, or heard of them! Are you at Dana Farber?



Fighter - enjoy your trip to NYC! Any special plans?.



~~~~~~



So I lived it up in NYC, it was great! We had theme food, lol - ate at the Bourgeois Pig on Friday, the Spotted Pig on Saturday, and the Pig & Whistle on Sunday. A friend of DHs gave him amazing seats for Wicked - 7th row orchestra, center stage. It was wonderful! I ate too much, drank too much, but walked a lot. Fun fun!



So I am sitting in the chair, and my chemo plan has changed again, lol. We are doing Xeloda and Avastin, and dropped the Ixempra. TBH, I was a little on the fence about the Ixempra, it seems a bit overkill, and my doctor is concerned about toxicity and blood issues down the road. We will scan in 12 weeks both body and brain, and that way if something shows up, we can move to the Ixempra. I'll be doing 6 months of full-dose Xeloda, and possibly another 6 months of maintenance dose. My MO is also going to give me Avastin indefinitely for maintenance as long as I tolerate it and as long as insurance pays.



Basically, she is replicating a clinical trial. If I get to 36 months free and clear, we will stop the Avastin.



So I'm happy today to be starting, and relieved that I won't have to deal with the Ixempra. Knock on wood that I tolerate the Avastin and Xeloda!!