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Old 07-19-2007, 12:33 PM   #21
kat in the delta
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Kat in the Delta

Who said they also have Lymne Disease ? I have a cousin(MD) who is an expert on Lymne D. and makes talks on it...his wife has it, also.....
She drinks kefir for her stomach because of the antibiotics she has to take...and the health benefits of kefir also. She just e-mailed my son who is getting too anxious about the Bar exam he will take Mon, Tues and Wed..to go and get some "Rescue Remedy" by the balm(or bauch-sp?)co.--from a health store.....to calm him down.
I find that I need something to focus me and get me going.....don't know if it is right for all....but i am taking some adderal in am..............but I cannot tell if it is helping or not.... my whole life seems to be crashing in after taking all the chemo stuff..they don't tell you about all the bad side affects or at least my Onc didn't ever help me at all. Read some of the .....After Chemo things ................ I feel like I am the only soul on earth that feels like this slow...and achey...etc....
I do not know if I could even MOVE without a pain pill. That is sad.. but true.... I try not to take but 1 in the am.... Then, if I underdo...or OVERDO--------I am really in severe PAIN ......any suggestions on this ??? kat in the delta
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Old 08-16-2007, 05:58 AM   #22
MarieJZ
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to susan and rentrac

dear rentrac thanks so much for your contribution, i especially like your "battlefield " take on depression. if anybody got hold of the PDR or the manufacturer's package insert for herceptin, she may have noticed under adverse effects "mania" which is a psychiatric "mood" disorder. granted those with a predisposition would be the most vulnerable, and that we all here are on the battlefield, it's not too supprising that depression is an issue. this support group is kitchen table to so many,as well as a resource.
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Old 09-02-2007, 10:07 PM   #23
MAB1943
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hello I am on herceptin I started it w/taxol and now have been on it solely since June my question is does anyone out there on herceptin have neurapathy of the feet. My feel really hurt like I have blisters on the ball of both feet. I don't see anything but after walking any length of time my feel burn and feel like they are swollen but they aren't. I can not bend my toes when this happens. I also have clogged ears and runny nose. Constantly. I had a mast in Nov 06 and started chemo Dec 06. My cancer was invasive and I also had dcis and pagets nipple invasive. No lymph involvement. Her2 positive 3+.
thank you
Mary
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Old 09-03-2007, 12:24 PM   #24
rentrac
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Dear Mab,
what you are describing sounds like peripheral neuropathy. It's a common side effect of several chemos. It can show up in the form of pain, needles&pins, tingling or even numbness, and it comes and goes. I developed some in my fingers toes from different chemos (I don't even quite remember all of them, there have been too many! Definitely take it easy on the parts that are affected, and if it is affecting your feet, make sure you check them carefully every day. It's a common problem for diabetics as well, and I saw too many cases of folks who developed horrendous injuries and infections in their feet because they couldn't feel!

Unlike many diabetics, though, many, many folks who have neuropathy thanks to drugs like chemo usually recover full sensory nerve function once the offending drug has been stopped and the nerves have time to heal.

But take heart, there is a new drug on the market called Lyrica. I tried it and it helped me a lot while I was on Herceptin. In fact, I'm developing neuropathy again thanks to Tykerb and Xeloda, so I'm planning to ask my onc about starting it again. (I may be an MD, but I'd be an idiot of a doctor if I tried to treat myself! Besides, my specialty is child psychiatry, though cancer is getting close thanks to this home study school of medicine I found myself in.) Hope that helps.

With warm wishes but not burning feet,
Rentrac
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Oct. 2003: Dx age 48, Stage IIIA Ductal Ca. dense dose neoadjuvent AC. BrCa 1&2 -, ER+, PR-, Her2+. 2004: R mastectomy, 3+ nodes, dense doseTaxotere ( allergic), total hysterectomy, radiationx36 . Tamoxifen x6 mo., Arimidex x9 mo. Jan. '06: Multi left metastatic nodes left neck. Stage IV. Taxol, Carboplatin (allergic to both), Herceptin, radiationx27. Herceptin cont'd. 1 mediastinal met in old rad field. April: 2 brain mets - Rcerebellar, Ltemporal lobe. Gammaknife. Stop Herceptin, Start Tykerb. May: CyberKnife-mediastinal node, Zometa restart. July: New RLung mets. Xeloda add. Jan. 2008: CT: Lung mets shrinking. Fatty liver w/increased liver function panel. Feb '08: MRI: brain mets back, 2nd GammaKnife. June: Migraine headaches from cerebellar tumor. Team for WBR - Choose Craniotomy on Cerebellum only. Aug: Crainiotomy successful. Sept: PET -right lung apex clean; left internal mammary artery appears malignant. Herceptin in future. Left mastectomy?
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Old 09-03-2007, 01:31 PM   #25
weezie1053
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Mary, although I have been a member since last fall, I only recently started reading the posts and threads in the past couple of months. There have been numerous comments regarding neuropathy which is quite common following Taxol. I had horrific neuropathy at the end of my 16-week Taxol cycle (completed in Feb 07). Both my hands and my feet throbbed. My Oncologist prescribed Neurontin after I read about it on this website. It did, however, make me drowsy. I later switched to Lyrica which really relieved the pain. I had a very rare side affect to Lyrica which was itching in the mid-stomach area. Don't know of anybody else with this side affect, but I, of course, got it. The itching finally stopped when I quit taking the Lyrica. I would recommend it vs. Neurontin. Do not be hard on yourself about your ankles feeling like they are swollen. This too is a side affect of these drugs. I only recently could walk down the stairs normally without placing two feet on a step. I didn't see the veins in my feet for months due to puffiness. Other than a little numbness in my toes, my neuropathy is finally waning. It took 6-7 months, however, before I felt like I could walk normally. Today, I walked three miles with my grandson with no lingering tiredness or pain, so the light is at the end of the tunnel.

The sun will soon shine on you as well.

Hang in there!

Louise
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  • Diagnosis 06/06 - Stage II-A BC; BC was 2.5 cm, grade 2; ER/PR negative & HER-2/neu positive;
  • Mastectomy w/ reconstruction (implant) in 09/06;lymph nodes - negative;
  • AC/Cytoxin combo - 4 treatments (dose dense);
  • Taxol/Herceptin combo- 12 weekly treatments;
  • Completed chemo - 2/07; completed restruction 02/07; reduction of left breast.
  • BRCA 1 and 2 negative - 6/15/07;DX high risk for distant recurrence
  • MRI, 08/02/07 - NED
  • 1 year Anniversary - 09/07; completed Herceptin 11/07.
  • Mammo 02/14/08 - NED; MRI - 08/2008 - NED
  • 2 year Anniversary - 09/08
  • Mammo 02/09 - NED; MRI - 08/09 - NED
  • 3rd year Anniversary - 09/09
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Old 09-04-2007, 02:56 PM   #26
Mary Anne in TX
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Hi Susan!
I hope you find a good solution for your depression. I do know that the herceptin can make us feel depressed, but I had a goofy experience with antidepresants years ago and just would prefer to "walk it off". My dogs take me for at least one long walk a day! When needed, two or even three! Not sure why the walking works better for me but it does! My little mother in-law has taught me to walk in Walmart when bad weather prevents other walking. I have gone several times at 5:30 in the morning when I waked and just knew I needed some "mood therapy"! But, I do know that we are all so different. I hope you find just the right thing very soon.
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Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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Old 09-05-2007, 06:51 AM   #27
MAB1943
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Thank You For Your Response. It Helps To Know There Are Others And Hope That The Neuropathy May Disappear. And There Is A Drug To Help Too!
Mary
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Old 09-05-2007, 06:54 AM   #28
MAB1943
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thank you Louise just hate to take another drug. Feel like my body won't handle it.
My goal is to be able to walk every day without fail. Between my feet and knees, I am going to be a while to see this goal, but I will I am sure of that!
Mary
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Old 09-07-2007, 06:55 AM   #29
anitab
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BC treatment and hypothyroidism.

Hi Susan, I have been trying to find out about herceptin, tamoxifen and thyroxin interactions, and came across your post. I too have hypothyroidism, and have been on synthetic thyroxin (levaxin) since 2001.

I will also post this separate on the main forum

Went through chemo and radiation last year, been on tamox for 1 ½ yr, and finished my year of herceptin in May. My TSH has been getting lower and lower, and at the same time I have been feeling worse. Fatigue and depression, severe brain fog, muscle and joint aches i a. For me, typically hypo symptoms, but of course it could also be side effects from the bc treatment. I believe that’s what the docs wanted to me to think it was. In sept last year I complained about this to my doc, she suggested anti-depressiva, and me to visit a psychologist. I refused any more drugs with side effects, but agreed to start in therapy

In February, after almost a year into tamox treatment I noticed the freeT4 was low even if the TSH was low. Increased my dose in spite of what the doc said. She was sooo afraid to let the TSH go below 0.2. Felt a bit better, but the depression and the brain fog was still there. Then I asked to measure free T3, and it was very low! Asked for synthetic T3 (here Liothyronin, think it is called cytomel in US) to combine w thyroxin, but my doc had never heard about it. After a lot of tears, she agreed to give me some, and as my T4 also was a bit low, I just added a small dose to the thyroxin dose. It is otherwise recommended to lower the thyroxin dose to avoid hyper symptoms.

After 3 days the brain fog went away! And the insomnia!

After 2 weeks the depression was gone!

My TSH is now 0.03, I have no hyper symptoms, but my mental state is still a bit unstable. However, the continual faint-heartedness I felt before starting on T3 meds is completely gone.

After searching I found that tamox interacts with thyroxine. My onc never told me this, even when I asked, and talked about getting off it. (I don’t have the link to what I found, my husband got hold of it through the university archive. I will post the abstract.) And who knows, Herceptin might be doing the same. There just haven't been any studies about it...

I still have aches, fatigue, and some headaches, and I guess it’s the herceptin. I believe my body is drained from all the chemicals and synthetics I have taken the last years, and I’m doing what I can to detox. But that’s another story and another post
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