February 2014 Starting Chemo Club

Summerwheat

Goldie, so sorry about the job, that's terrible. I  having platelet issues as well. Now, more fun: I noticed that my TE is softer than usual and went to PS - guess what, it is a leak. Keep it coming ... Not sure yet what to do about it , I am in the middle of chemo.

Jeanette, thanks for the humor , I so need that right now.

Jules_NY

Hi Ladies

SUMMERWHEAT and LGOLDIE sorry about your platelets. Hoping they rise quickly! 

LGOLDIE also sorry about your job. Can they terminate you while you are on sick leave? Is that legal? Not trying to complicate things with that question.

TANGANDCHRIS I have crazy hot flashes at night. Wake up throwing the covers off of me. Hubby LOVES that! Then I freeze cause I'm drenched...vicious cycle. Like everyone else said my MO told me I'd go into menopause, and get all the symptoms that come with it, maybe perminantly. 

For me TAX #3 down and next week I'll be halfway done with chemo!!!! That went fast, hoping the home stretch will too! My anemia is improving too! 

Quick question. Those of you with bloating  are you taking oral steroids or is that just from pre-meds?

lago

 LGOLDIE that does stink. I'm not sure if they can terminate you if you are on short term disability but long term I believe they can. This is a good source to find the answers to that question: http://www.cancerandcareers.org/

I have been to one of their presentations and they do talk about this. One of the women at the presentation was an employment lawyer. I highly recommend you contact them.

linda505

On those having the hot flashes/sweats and waking up drenched then freezing --- one of the ladies in another thread recommended wicking PJ's to me.   I went online and saw where to order them but decided I couldn't wait so I went to walmart and bought some wicking danskins shorts and tops - you know the exercise clothes.   ANYWAY - what a world of difference.  I do still have the sweats/hot flashes but I do not freeze after anymore and do not wake up drenched - they really have improved my sleep - you can usually get them for about 5 - 10 dollars so worth giving one set a try - I now have 3 sets so that I can wash them after each use.

3doglady

Lgoldie, THAT completely sucks. You will rise above this, even if its hard to believe at this time.

I've been having the dry nose bleeding during chemo, but this week, two full blown nose bleeds.  Im still clotting, so thats a good thing.  The taste in my mouth is horrible; wouldnt call it metal, but more like sprinkling cracked black pepper on my tounge and letting it stay there.  Yuck!  Number 6 of 12 down.  

The "fullness" I had talked about earlier resulted in a doppler scan of my neck and arms to make sure I didnt have a clot because of my port.  No clot.  But, that fullness kicked back in two days after chemo and lasted for the most part of two days.  Still a little uncomfortable, but tollerable this morning.  I just don't buy that its anxiety.  Ive had anxiety attacks before, but not like this.

jbokland

I think I know the fullness you talk about! For me, it felt like I ate too much while wearing too tight clothing. Make sense?

christyGA

How long does it take for the bloating/swelling to go away after chemo? I am miserable from it. None of my clothes fit. Also, how soon after my last dose of TCH should I get my TE exchange?

lago

ChristyGA I found I started to feel better about 5 weeks PFC (Post F@*cken' Chemo  or Post Final Chemo). Some people may need a diuretic to help. In my case some of the retention never went away. This is due to being thrown into menopause. My mom retains fluid and as I age I am turning into her. I take a very small amount of diuretic to this day but that's not typical.   

As far as the exchange you need to ask your PS. My PS wouldn't even expand me until my MO gave the OK that my counts were OK. Typically you wait about 3 months after final expansion but if you are fully expanded  and haven't had RADs then it could be sooner. But in general I wouldn't be surprised if your PS wanted to wait 3 mnonths.

h0pe

Is the feeling of fullness you guys are talking about kind of like indigestion? I'm not sure what I'm feeling...I just want to feel normal again! Lago - so it took you about 5 weeks PFC to feel back to your old self? 

jbokland

For me it's more like trapped gas, tightness. 

Feeling vaguely shifty... it's the new normal. Lol

lago

h0pe unfortunately no. at 5 weeks I started to feel much better, less stiff, eyes not as watery etc. (I got very stiff on Taxotere). But after that it's all uphill from there unless you are unlucky like me. I got a serious case of shingles 3 months PFC. Delayed my reconstruction exchange over a month.

But those who are on a different chemo cocktail it could be different. Even  from person to person it could be different. I was extremely healthy going in with no health issues and relatively young. I also didn't have any major complications with chemo. I also never had flu-like fatigue.

3doglady

There is a fullness in the "belly" but I also get it in head and neck, pressure in ears, pulsing jaws, headache in back of head.  Both combined, very uncomfortable.  Im just not convinced its anxiety. But every time I eat, regardless of how much, I feel like I ate too much and dont need to eat the rest of the day.  I personally just want to know what it is.  It even feels like my neck is swelling, but no physical swelling.  Tee shirt collars are choking me.  Despite this, I feel pretty lucky that Ihavent had too many side effects.  

lago

Have you discussed this with your MO? Maybe you have a sensitivity to something you eat. Sounds like some kind of gastro issue. I know I can bloat from eating but I have IBS.

3doglady

YepThats why she ordered the dopler incase my discomfort could be caused by clots from my port.  The discomfort always starts on the port side.  No clots.  It also seems to appear on Thursdays, two days after my infusion, and continues into Friday.  My nurse suggested monitoring my blood pressure, temperature, and time this happens so we can pin point it.  

lago

Good then they are not ignoring it.

gatorgal89

Just got back from my MO and she stopped my Taxol due to neuropathy. Screeeech! Now I'm switching to Taxotere once every three weeks for 2x. Anyone have experience with this? I had a brief moment of thinking I would just call it quits and forget the last two treatments.

lago

gatorgal89 I had 6 rounds of Taxotere (with Herceptin and Carboplatin). In the same family, from the same tree except one is from the bark and the other from the needles. (Well might be synthetic and only dirived from the yew tree). Typically you get more issues with neuropathy with Taxol. I had some in my left heel. Still do but not too bad. You can also get Taxotere weekly I believe. But remember if your neuropathy continues to get worse you must let your MO know.

MomMom

Hello,  I just posted for the first time less than a week ago and just today found this link.  I started AC at the end of February, have completed 4 DD rounds of AC and will have my third of 12 weekly Taxol this Thursday, after which I'll get 6 1/2 wks of rads.  So far, so good on the Taxol!  Much better than AC, although between the anti nausea meds and daily exercise, which I'm told has really helped me, I was never nauseated on the AC - just felt slower and always had what I call a "pewey" taste in my mouth.  Lost 5 lbs and have only put back on a pound or two with my much improved Taxol appetite.  Hope the tinny taste I've heard about w/Taxol never comes my way.  As posted elsewhere, I lost one big toenail on AC (unusual) and the other one doesn't look great, but it's hanging on.  I decided to put some polish on my nails (including the "iffy" one) so I can look normal in sandals.  Have a bandage over my big toe w/no nail when I go out.  It makes me feel great to look down and see almost normal toenails!  I'm using frozen booties and gloves while Taxol is being administered to hopefully prevent more nail loss and lessen the chance of neuropathy, which sounds so bad mostly because it lingers on indefinitely for many.

Re hair - just some white with a little of my normal brown peeking through, but I read somewhere that when it's starting to come back in, it often looks whitish because there's no melatonin in the new hair, and that your regular hair may come in later.  Anyway, it will be many months of wearing my caps to the gym and my wig when I go out.  Am losing eyebrow hairs, but enough are still there, and had the longish eyelashes (guess that's because they're getting ready to fall out:-).  I use an eyelash curler before mascara and for the first time ever this morning, my hand moved and I accidentally yanked out about 5 of them.  Ugh!  

All things considered, I consider myself very lucky to have tolerated the treatment as well as I have at this point.  I've had a few pesky SE's which delayed my Taxol by one week, but could be a whole lot worse.

I'm getting a lot from the courage of you ladies who are also plowing through all of this.  Thank you for your candid comments! 

3doglady

Any thing to help prevent further lifting of nails?

lago

3doglady They say icing them. I tried the frozen peas but it didn't help me. Every toe and fingernail lifted. Lost a few toenails and had to have one removed. I got it really bad. One thing is try to avoid trauma to your feet and nails. Granted I couldn't do that. I  power walk, type made dinner. Not sure if you can purchase these in time:  mitts and booties . They aren't cheep

MomMom

Lago, So sorry to hear that all your nails lifted - UGH!!  I've heard sometimes they can lift but heal themselves without coming off.  I did purchase the Elastogel gloves and booties, which you freeze, and have worn them while the Taxol is being administered (my third weekly Taxol out of 12 is tomorrow).  Some women have had success with these, but some not as you Lago did use frozen peas and didn't seem to make a difference.  I also got the OK from my MO to take Biotin and they also recommend tea tree oil on the nails daily.  Other ladies have recommended going to an acupuncturist to help prevent neuropathy.  I have my first ever appointment on Friday. 

Summerwheat

TCH #4 down ... blood platelets had come up to 112,000 by yesterday. Now I am being carefully monitored what that could be. And it turns out (yeah to my knowledgeable MO) that I do have a light case of shingles that could have contributed to the low platelets, being a viral infection. So much weird stuff going on. Just taking it one day at a time. Feeling great today, all hyped up on steroids, can foresee the crash in the near future.

Everyone have a good day! Alexandra

Lisaj514

mommom, sounds like you are taking a proactive approach with the icing, biotin and acupuncturist. It certainly helps to feel that we can do something instead of waiting for symptoms and then treating with more drugs. I iced during dd taxol and had no nail problems and no neuropathy so of course I do t know if it was from icing or I wouldn't have gotten it any way. Also used biotin and nails have definitely been harder since starting and I am hoping it will help with my hair regrowth which is starting to happen 3 1/2 wks PFC, although very slowly and it's light and sparse. Btw I made my own ice packs with alcohol and water and fleece covers. They have to stay cold the whole time during the entire treatment in order for it to work they say

tangandchris

I'm giving some serious consideration to going out on short term disability soon. I'm exhausted and working is becoming harder and harder. I was going to wait until I start radiation to go on disability, but my MO's nurse told me today that my iron is very low and it will probably continue to give me problems for awhile even though only I have one more tx left. She just told me that I need to take it easy and not push so much.

So, I'm wondering what most of ya'll are doing with work. Luckily I work from home, so this has helped alot. I still have to be available for phone calls thru out the day and I'm on a clock just like if I wasn't at home. Have ya'll continued to work or gone on leave? Just curious. I'm still new at this job too, I was disagnosed 3 months after I started this job.

lago

MomMom I have been taking Biotin for years even before chemo. My MO was fine with me continuing through chemo. I did not get the elastogel gloves and booties. Even if I knew where to get them and was really informed about the nail lifting (was told it was rare… so of course not only do I get it I get it big time) I couldn't afford them. I was unemployed at when I was diagnosed.

Tam178

To continue FEC-D treatment... or not? Advice welcome!

I am looking for opinions, although I know the decision is mine to make, but anyone who could voice opinion either way I'd welcome the feedback.

Helpful info: I am 37 yo with kids age 3 & 5, and the IDC tumour was 1.8cm max with DCIS found too and 0/5 lymph nodes tested positive. ER/PR +ve HER2 -ve. Lumpectomy +SLNB (Jan 2014)+ Radiation (21 treatments to breast incl 5 day boost) & Tamoxofen to follow chemo. Plan was for 3 FEC & 3 D chemo...

I completed one FEC round (25 Feb) at full dose but due to mouth ulcers (plus nausea etc) dose was reduced by 15% for round 2 (11 Mar) & 3 (1 Apr) where the nausea and mouth sores were still present but lessened. I started Taxotere round 4 (29 Apr). I had Neupogen injections daily (day 3-7) which caused me awful bone & muscle pains from my jaw to my ankles and I could barely walk and spend most of those days in bed with the heating pad and doses of hydromorphone every 4 hours plus Celebrex twice a day... Just for extra fun on day 7 (just as the mouth sores re-appeared!) I developed a fever of 38.2C and ended up at the ER with Neuts 0.04 and was admitted for Febrile Neutropenia with IV antibiotics. The blood culture came back positive for staph and confirmed sepsis - scary stuff with no immune system. After 3 days my WBC were up to 12.6 (good fighting the infection!) and Neuts were 1.9. I was let home on day 4 (last Friday) with 3 more days of Cipro antibiotics. I did start to get less body pain since I came home (stopped the hydromorphone) and yesterday I actually felt I wasn't in pain just moving and have even stopped taking the Celebrex!

I've also got awful dry eyes (taxotere causing this) had awful constipation from the meds which caused an anal tear (great fun!) and have to brush my teeth & use medicated mouthwash 4 times a day plus myrhh tincture to keep on to of the mucositis... All this is NOT fun!

I met with my oncologist today who was very sorry for what I'd been through and basically offered me two choices... But I only have until Tuesday to decide (when next chemo is due)

1) Continue Chemo - this would be a 15% lower dose (again) for at least round 5 and then possibly (but unlikely) go on to round 6... Likelihood in his opinion is that I will be hospitalised again with another infection due to the increased risk with my sore mouth and previous reactions...

2) Abandon remaining Chemo and look at removing my ovaries as soon as I'm well enough after radiation is complete to give me additional protection given the ER/PR +ve receptors.

My med onc. was stongly leaning towards option 2 as he feels he's "broken me" enough so far and really wants to "cure me not kill me"!!!

So far I have agreed to proceed with the paperwork for option (1) so I will have the choice, but the more I try to weigh up pros & cons the more I am leaning to option 2... Getting the PICC line out before the summer to enjoy the water with my kids plus no more chemo sound SOOOOOO inviting. BUT if I can stick with at least 1 more chemo he said there around another 1%ish benefit in the chances of recurrence...

WHAT WOULD YOU DO??????????????????????????????

lago

For 1% and your MO recommending not moving forward with option #1 I would listen to the MO. Remember there is no guarantee that even if you do 1 more round of chemo that you will be cured. Just know that you will commit to endocrine therapy for at least 5 years (or 10 if you are on Tamoxifen). You may end up getting one of the AIs instead of Tamoxifen if you get your ovaries removed.

Rarely does the MO not want to move forward with chemo.

Brwneyedgirl

LGOLDIE  I have worked all through chemo.  Last round tomorrow.  I started a new job 10 days before first round of chemo.  I really felt like I needed to be at work.  However, the last three weeks have really been a chore and I have questioned my contribution and ability to perform.  My boss has been terrific, she fought her own battle in her twenties so understands my need to balance work and chemo.  I also needed to feel as "normal" as possible knowing that my energy level could be a problem down the road.  Lucky for me so far the side effects have been manageable.   I wait to see how much rads take out of me.  I do have the option to work from home a couple of days a week.  Good luck and take care of yourself.

3doglady

Tam, if you have to go through another round of chemo what are the long term reprocussions of a physiological set back and any further damage to an already compromised immune system.  

Jules_NY

My first bump in the road. Developed a fever on weds morning 102F went to MO and was found to be neutropenic with total WBC 0.9 and ANC 300. My son was also sick from Sunday to Tuesday with some viral thing and he had to stay home because of fevers. Got neupogen and am currently admitted getting IV antibiotics and tamiflu. thankfully all cultures are negative, my counts are all up and I've been afebrile since yesterday. Hopefully I get to go home today. I'm bummed a round of taxol was cancelled but thankful this is turning out to be a minor bump. 

Tam. Sorry to hear you went thought the same thing recently and all the other SE you are experiencing. I have small children too 4 and 6. I agree with lago, if your MO is leaning away from chemo and seems like you are too then go with that. I hope you can come to a decision soon so you can put it behind you and move forward!

Tangandchris I am still working too. I did through AC also. I was able to cut back my hours a little which is helpful. My surgery is not until august. I was planning on take leave for that and radiation after. I keep wondering if I should just stop now too since it is getting harder and harder for me also but to be honest I don't know if that necessarily means I will take it easy at home, lol. I sometimes feel like I get some rest at work! Good luck in whatever you decide!