Starting Chemo February 2009?

Judy - I am so sorry about your pain. Yep, Chemo, the gift that keeps on giving....I am glad the splints seem to work, but I hope they can do something at least to help you out. Man, if it is not one thing it is another...I am having mild achiness in the wrists and ankles after starting Arimnidex, but nothing too terrible yet. I'm hoping it stays that way. I get really addicted to computer games too, I found our old Game Boys when I was clearing up to have the bathrooms done, and my Husband and I have been playing them ever since. The kids now want DS's for Xmas!

Cheryl - wow, that is a relief! Yah for you. Always good to hear you are normal, but good to get it checked out too. I hate the exams when they feel you for lumps, I get my husband to pat me down the night before! I keep feeling things that are actually ribs. 

Helen - thinking of you at Rads today. I don't know anything about being HER2+, but it sounds as though you need a second opinion. 

Jaimie - sounds as though you have found a better Kidney guy. The stint removal sounds painful but at least it will be quick. I remember getting my drains out - one nurse just was quick and it was over before I knew it, the other one flapped about and was all nervous and slow, and it was much worse. 

Well, Happy Friday to you all. Think it is going to rain here tomorrow. Oh, well, we have loads of errands to run. We are going to buy the kids new School bags, and I was thinking I need to go through their closets to hunt down Fall clothes. Not sure much still fits them, so we may need to get them a few clothes too.  Anyhow, have a great day!

JUDY - I've had carpal tunnel syndromes on and off for years.. the worst were killed by the nightly wrist splints.  Inflammation can cause swelling which can reduce the size of the tunnel 'restricting' nerves.  (i am no doc obviously).   One doctor suggested i take the maximum dosage of tylonel for 4 days.. and that knocked it out once.   I sleep like a chicken with my hands folded into my armpits often and the splints helped keep the tunnel from being squeezed at night.   I hope it just goes away.  I;ve learned to keep the tunnel open somehow and haven't used the splints for years...I;ve learned how one should not turn one's hands to the sides while working or practicing.. the middle finger should point straight forward from the line of the forearm.

This Femara i'm on causes the worst aches and pains.  I can't figure out what causes the pain. However, I've figured out that stretching and pumping the joint (or spine bones) 5 to 10 repetitions of a movement gets that sore area nonhurting and functional.  The first thing I do in the morning, before even stepping onto the floor is test all the joints that bend.. pulling my legs and feet up into a tuck several times, pointing my toes, stretching my arms up above my head, testing the torque of my spine and neck.. then i slowly stand up and start moving on my feet.  I stretch my hamstrings while brushing my teeth and waiting for the kids to wake up.  a couple pain pills first thing in the morning and then maybe 1 or 2 later thruout the day keep me functional and nonhurting.  I'd like to reduce that to one pill a day.  just one.  I don't like the idea of maintenance pain meds.  It has to impact one's body sooner or later.

whoops, i lost a kidney.

I was so happy that the wrist splint helped on Wed night, so last night I wore them again....ended up tearing one off at 3am, trying to relieve the pain, and the other one at 7 this morning...the pain was soooo bad....I am bummed that the splints didn't help this time. I don't even want to go to bed, cause I know it's going to hurt in the morning. I've never felt such burning, searing pain before....even though it only lasts less than an hour, it is awful.



I went with Julia to her pain doc appt this morning, and he said he treats lots of cancer patients with neuropathy, and said that is what my problem is....and that he can help, so I have an appt with him on Monday.



I guess I am surprised that it started hurting almost 2 months after finishing chemo....this whole chemo side effects thing is so baffling to me....

Judy~ I have some SE that are getting worse, not better, too... I don't get it.

Judy - glad you have found a Dr to help you. The pain sounds terrible. Hope you slept OK last night.

ditto to Apple -  it sounds like no fun at all.

Cheryl - you must be so excited about your trip!!! Have you been in that part of the world before? It is a good idea about the LE sleeve, I meant to ask my BS about that.  We have no plans to fly anywhere at the moment, but if we go to NZ for a visit, the flight is 13 hours from California, 5 to get there. So it has crossed my mind. I don't think they are checking my estrogen level, I cannot imagine I have much left, with no Ovaries and the Arimidex. No voice deepening yet...! What is the trial you hope to go on?

Kathy - great to hear from you!  Hang in there, you will feel good again before you know it. It is funny, people keep saying to me now how great I look, I must have looked pretty terrible during Chemo!!

Well, I was very productive yesterday. Trimmed the front hedge, and washed the car. I was embarrassed by how filthy the car was inside - kids and camping will do that!

Hope everyone has a great weekend.  Supposed to get thundery here this morning.

Good Morning everyone....it's not raining here today, so that's a good start!  Plus, the wrist splint helped again last night, just a little numbness/pain in fingers only, so that's good, too.  I wonder if it hurt so bad the other day because I had washed the walls in DS's bedroom the day before???

Apple:  I'm not a huge fan of pain meds either...I think this doc is going to try one of the 'nerve pain' type meds like Lyrica or Effexor or Elavil...he said that nerves repair themselves one inch per month, so if you have 12 inches of damaged nerves after chemo, expect it to take 12 months to repair. 

Kathy: I don't know about Avastin, but the taxol does cause achiness, I know I still have it.  My eyebrows came back in about 1+ month after finishing the taxol, eyelashes, too.

Kerry:  You just reminded me that I haven't trimmed to bushes out front in a while!  Oh well, my neighbors will just have to understand this year! 

Marybe:  Good to hear from you again....I like your new avatar pic, you look great!   I had 9 tx's of Taxol, we had to stop early due to neuropathy symptoms, too....so I wonder how that will effect you, if you are already having bad neuropathy???  Mostly the Taxol caused me aches, pain (including headaches) and neuropathy....no nausea or that hit-by-a-truck type of fatigue, but milder fatigue.  It didn't really effect my taste, but it did make my eyebrows/lashes fall out about 1 month after finishing. I lost one toenail, no infections.  Hope that helps.

Hope everyone has a great day!

Hugs

Judy

  Thanks for your replies Judy and KerryMac......you are both telling me what I feared.....pretty much the same side effects.  As for those, I honestly think my onco doesn't care as long at it is working....that is what he kept saying as I was going on, but what about my eyes? and what about the neuropathy," But it was working."  That actually is not a new pic...that is one taken during....I don't have eyebrows like that now, but they are growing in....I can see dark areas where they are going to be and little tiny hairs are there.....sort of like a 5 o'clock shadow, but not on my face, Thank goodness.  Hmmm, wonder if that whisker I was always plucking will be back?   

Kathy, what avastin did to me was cause me to be really congested and I had nose bleeds and was constantly blowing some pretty nasty stuff out of my nostrils.  People kept asking me if I had a cold all the time.  They use it a lot in conjunction with chemo it seems.  I don't want to go back on it, but if I get Taxol or taxotere, know my onco will want to do it along with. 

      In the meantime I am going to a small town festival today and plan on eating corndogs and elephant ears and some great junk food while I can still enjoy taste.  Hope you all have a good weekend.  Marybe

i certainly have lost some brain cells.  i don't think i can qualify as smart anymore

oh well, dummies have fun too.

Marybe - I had 3 taxotere treatments. I had a lot of nerve, bone, muscle, joint paint also.  I was pretty much in bed for 2 weeks after the 1st.  I actually paged my Dr. for pain medication after about 10 days.  (can't exactly remember & somethings are not worth remembering)  T3's apparantlly don't help much for this type of pain.  He perscribed ocycocet which helped quite a bit but made me very drowsy.  Then, the oxcycocet gave me hemoroids (sp); fun times!  Prior to the 2nd my oncologist perscribed gabapentin and I also took ocycocet.  The 3rd time wasn't so bad.  I think I had the pain meds mastered by then.   But, I am so glad that I was able to persevere and get all 3.  I have heard and read positive things about taxotere.  If it has all of these side affects; it 'must' be killing the beast if any of it was left!!  I used the ice mitts and slippers but am losing all of my nails on my left hand.  I had a lot of neuropathy (still have some).  My nails only hurt if you touch them.

 Apple - My brain needs some serious rehabilitating.  I worry about it some days.  Hopefully, the fatigue and too much worrying are having an affect.  

Take Care Everyone

Bev

Hey Helen - don't be embarassed! I am glad you have us to knock ideas around with. I love the support I get from you guys. No one else I know really "gets" the whole deal. Anyhow, I have heard enough stories on these boards to know nothing is a sure thing, there are women who have had terrible prognoses (sp?) and are still going strong many years out.  You have such an early stage and a small lump with no nodes, you will do great, I am sure.

Bev - my husband said the same thing to me when I was suffering with the taxoterribles -  anything making me feel this bad must be working!

Well, we had an errand running day yesterday, got the kids their stuff for school, and enough food to last us a couple of weeks. Then Jack got sick last night, with lots of puking. He seems OK this morning though. Hoping to get yard work done today, but it looks really grey and yucky out.Anyhow, hope everyones weekend is going well!

Marybe  - for what it's worth, I found Avastin quite tolerable (in combo with taxol)..  my nose was gunky, (actually, my sinuses cleared up a bit after I blew my nose)..my blood pressure went up about 15 % - but went back down when I was thru.   Otherwise, I didn't notice it.  I wish you luck, peace and good treatments.

Marybe

I remember now that you said you had relatives here--sorry I didn't answer the question.  Sometimes I just lose my mental "threads."  I live on the southwest side of Springfield--just west of KS expressway and north of Hwy 60--close to the Palace Theater. 

Are you going to another onc for a second opinion?  I hope you find the path report--since your obgyn sent you for the first mammo, I imagine he/she has a copy of it.  Good luck Thursday.

MrsRockytops--I think you asked me (a long time ago) if I had been to CR to see my sister.  Unfortunately, I haven't, but hope to do that after this bc stuff is over!

Furies, I hope you're all having a good weekend. The weather here is wonderful...hope it lasts (all winter would be fine with me).  Take care.  Helen

Kerry:  ok, let's see....9 degrees celcuis, times 1.8 plus 32.....ok, it was 48 deg. F at your house this morning.....we hit 49 as our overnight low, I agree, too cold... Oh, I hope your son is feeling better today, poor kid.  

Marybe:  I am sorry you are facing such a dilemma, especially since the chemo is working for you, but I understand your concern over neuropathy.  I just read your profile, wow, you've had 22 tx's already....how many more (of the taxoterribles) do they want you to have?  I hope your new onc appt goes well.

Kathy:  Congrats on finishing chemo!!!  I can't help you with the rash...maybe the herceptin, if that is a new drug for you???  I'm glad that the antihistimine helps it anyway. 

I actually did not make it to my dr appt this morning for 3 reasons:  (1) I slept in (2) my DD told me that he charges $300 for the first appt., and (3) I'm pretty sure my onc will prescribe me the same type of meds he would have (elavil, effexor, lyrica, that type of thing).  So, I will call my onc later and see if they can help out here.

I plan to grout my mosaic table today....that means I'm almost done...finally!!  I can get it off my kitchen table, and over to my DD's apartment...she's very excited.

Hugs

Judy

Gram, I talked to my cousin last night....he said you are where my uncle lives....I can't remember what the place is called, but know we had lunch at a McCallister's not far from the retirement center he lives in.  Judy, I had 22 and that was it....went to my appt which was supposed to be my 23rd and told the onco I could not do anymore and told him all the SEs I was having...at that time he agreed and said we would look for something else, BUT then I had the scans the next week and once he saw it was working, he changed his tune and then decided we should stay in the same family...we were to do scans after 24, but he talked long term from the beginning so I don't know it that would have meant every week for the rest of my life, if he would have spaced the treatments out after we got to a certain point or what....all I knew was that I could not do it long term.  I think a lot of my friends feel I should have stuck with it and maybe I should have, but I feel so much better now and am so happy that most of the lesser SEs are gone.....sadly enough neuropathy and tearing eyes are still with me, but I am hoping those will improve.  I am not saying I will never do chemo again, I just want to try something else and also want to explore the radiofrequency ablation and that is what I have a consultation appt for on Thurs.  Bev....by doing it every three weeks what was the dosage?.  I was getting 150 of the abraxane which equalled to 600 per mo which he says is the rec dosage.    I got some records from my gyno today from 90....I had a multifocal intraductal carcinoma and a .9cm area of invasion.....it was where they had been watching microcalcifications for severl years.  I remember having cysts biopsied and going for mammograms, but was always told everything was Ok up until then. The hospital is still trying to locate the actual biopsy report.  I need all of these records to take to the onco/rad on Thurs.  Well, I must turn in.  Tomorrow is an early work day..7AM....Groan.