Taxotere is a nightmare

Survivorwoman

Tracie-- good news, thanks for sharing it with us.

Survivorwoman

I just received this on FB. It is a good article :  Getting undepressed without pills.

http://www.psychologytoday.com/blog/the-power-rest/201102/getting-undepressed-without-pills

marjie

So happy for you Tracie...happy for your hubby too.  What a burden he was carrying around.

Survivorwoman - Thanks!  Yes I am very happy to head home and see my mom.  She's 89 years old and I have been just as worried about her and I'm sure she is about me.  Although she only lives an hour away, while I was sick, it may as well have been a world away - so I do appreciate how lucky I am that I can get there now.  I am going on my own too which really makes me feel like a little of my old self is coming back, lol.

Omaz

Tracie - Happy happy for you and your husband - this really does throw them for a loop and maybe it was hard for him to express himself - have a wonderful date!!

sunflower71

Has anyone skipped their last chemo due to neuropathy?  I just finished round 5 on Thursday, and even with a 20% drop it is still getting worse.  I am torn between continuing on with the last round or rolling the dice that 5 was enough. 

Omaz

sunflower - Yes I did.  PM me if you want.

Linda-n3

Tracie and survivor woman, thanks so much for your kind notes.  Today is a better day, I increased my walking time from 20 to 25 min, and I'm being kind to myself today.

I think I started on this path of treatment because I love my husband so much – I realized from the moment of my diagnosis that he was terrified of losing me, and I was terrified at the thought of leaving him alone.

Sunflower, I only did two full doses of Taxotere, with reduced dose of the third, and discontinued completely on the fourth round, substituted Adriamycin for that round due to the neuropathy.  The neuropathy has persisted, and I am nearly 14 weeks out from the last Taxotere.  I have been told that it could take up to two years or longer for the neuropathy resolve, and that if it doesn't resolve, I would "get used to it."  Not a terribly happy prospect, see my previous post for all the whiny details.  I am currently on gabapentin with some improvement, but having significant side effects from the drugs.  By the way, I'd did take L-glutamine (not lysine as I said in my previous post) and I'm not sure whether it helped, but I think I may give it another try.

Lots of positive vibes and prayers today to all you ladies.  Let's all hang in there and get strong! 

shooshoo23

Tracie- that is such great news. I've tried to talk to mine and he just won't. But after hearing your news I think maybe there's hope. I've been worried about you because I live that way too. When my husband should be the best to me he is the worst. 

Ladies, I am 3 weeks out of chemo and for the past 4 days or so my upper lip will randomly swell up. I get fever blisters and at first I thought that's what it was but there are no blisters. It only lasts for 30 minutes to a couple of hours and it's only my top lip. Anyone experience this weird thing?? 

lago

Idid get a fever blister on my upper lip just before 3 weeks after my last tx. I never had a fever blister before on my upper lip before (just on the lower). I hit with some abreva and it went away fairly quickly.

Survivorwoman

I don't even know where to start. Just as thought I was getting better I had a total meltdown today. And low energy, too. I went for a ten minute walk and I was out of breath. I cried on the way home. On Monday I have a meeting with the oncologist and will ask her why I feel like I can't breathe. I should take it easy or easier. I guess the chemo and the steroids are still working in me. Oh and the diarreah is back, too. Insanity!

Omaz

survivorwoman - Where are you in your chemo?

lago

Survivorwoman sorry you are having a meltdown. Do you think it's mood swings from chemopause? Have you told your onc? You really need to tell your onc about this shortness of breath. And if you have already told her/him tell her/him again!

If there is one thing I learned about the chemo ride was you must tell your onc about your SE. You may thing it's something you just need to deal with but that's not for you to decide. When my first big toe started to get all white an cloudy I though no big deal. I finally mentioned it 3 weeks later and my onc wanted to see my toes… then sent me to the podiatrist. No need for me to go into my nail stories again.

Seriously the onc can't help you if s/he don't know what's going on. Even the emotional stuff. It's not uncommon. I know I was given anxiety drugs for my BMX and Chemo. Never used them but obviously not the norm or they wouldn't have given me the prescription.

Mood swings and depression are very, very common with chemopause.
Do not suffer with these SE.

Omaz

I agree with Lago - I tell my onc nurse whatever is going on.  Do tell them about the shortness of breath, that is concerning esp since you are on herceptin and taxotere.

thegood5

Congrats Tracie for having a heart to heart with your husband and getting things worked out...hoping you now feel like you have the support you need!  And love the pic by the way!

coni111852

Tracie!! That's great news!!! I'll pray for both of u!....I know it's hard I find that I have changed so much as well lately, I feel that I'm on rollicoster one minute I'm great, but my husband says one thing and I'm crying or mad....I don't like this me... I don't know if is because i didn't get my period this month or the steroids or I'm just tired....but I try to control e

My emotions, i know is not only us suffering but all those around us. Have fun and enjoy your date!!!

Survivorwoman

Thank you all for your concern. I am going to tell my onc about what is going on, especially , about the shortness of breath and the heart palpitations -- as always you are right, Lago. Those are very scary. I never had anything like those before. It could also be related to my anxiety-panick attacks, or the clinical trial drug, but I must tell the doctor about it. I have a long list to talk to her about. Thank you all for responding to me. I am so glad to have you ladies.

Survivorwoman

Omaz-  I am done with chemo actually. I am a little bit over two weeks post chemo and I am not doing Herceptin,but taking Tykerb (similar to Herceptin- but in a tablet form).

Survivorwoman

Lago - could the streroids that we got in the chemo be the cause of the mood swing side effects?

MiriamCecilia

I just had my first taxotere last Wednesday the 23rd. I was also led to believe it wouldn't be too bad after the first one since they were starting me off lightly. The first day was OK but I've gotten progressibly worse since. I found my BC lump myself on Dec. 27 2010 and after a whirlwind of doctors and medical tests I had a full left radical mastectomy Jan 21 2011. Less than 30 days from discovery to removal! Feb 18 th I had a metaport surgically implanted and then the first chemo Feb 23. So I haven't been able to heal completely from anything yet, especially my very painful breast wound that runs from the middle of my chest to under my armpit. My port hurts alot too.

Now I'm dealing with Taxotere issues! I can't stop shivering,my ears and jaws hurt so much they feel like they might blow up. My hands and feet hurt and tingle and my joints hurts so much that my legs went out on me a couple of times yesterday and I almost fell! This is a nightmare and I
want to wake up with both my breasts back and feeling well again....sob sob . I'm terrified of the following treatments if this is what they call "easy".

lago

Survivorwoman I have heard that long term use of steroids can cause mood swings but I know I didn't get too many steroids. Was only on it for 1.5 days each treatment. Not sure in your case but I'm willing to guess no. But I'm no MD.

Omaz

MiriamCecilia - I am so sorry you are having to go through this!  Did you get the neutlasta shot after your taxotere?  Are you doing any other chemo with the tax?  It is common to start the chemo pretty close to port insertion, I started my chemo about 5 days later.  Some women start the very next day.  ((((hugs))))  Glad you have joined us here!!

shooshoo23

MiriamCecilia- I'm so sorry you're having such a rough time. Taxotere is horrible as you can see from all the posts. I was considering not doing my last treatment because I had such a horrible time. My family convinced me to do it and I'm so glad I did. I needed to know I did everything I could. Be sure to tell your onc about all your SE's. They should be able to help with most of them. In the mean time this is a great site with really sweet, supportive ladies to encourage you and pray for you.

Survivorwoman- the steroids did a number on me! With mood swings and panic attacks. I'm three weeks out and the panic attacks are much better, but I feel like I'm on the verge all the time. My dr. wasn't convinced it was the steroids but I really believe it was. I am also breathless and have palpatations. I was in the ER 3 times with those symptoms and they kept telling me it was a panic attack. The last time the ER doc said it was too easy to chalk those symptoms up to a panic attack so he would not say it was a panic attack. He didn't know what caused it (what do we pay these guys for?!?) but my vitals were stable so he sent me home. I'm anxious to hear what your dr. tells you. Hang in there, hon! 

EricaH

Hello ladies - Does anyone have any experience with sun exposure while on Taxotere?  Everything I read says avoid the sun, but isn't specific about the reasons.  I am white as a sheet, it's a beautiful sunny day today - I would LOVE to lie outside for an hour.

 Would this be a terrible thing to do - really?  Will something else fall off me???  (Anyone else noticed it's never the UNDESIREABLE things that fall out - leg hair or underarm hair, for instance - but your eyelashes and hair take off like you are on fire or something.)

Omaz

EricaH - I live in AZ and I went out in the sun regularly for 15-20min per day to get my vitamin D during taxotere/carboplatin/herceptin and I didn't have any problems.

lago

Erica your skin is much more sensitive, dry and won't repair itself  as well as it did when you weren't on chemo. You need a sunscreen. Sun will only make this worse. You don't want to burn. I won't even start on the skin cancer issue.

BTW I had chemo the day after my port was placed. The port surgeon was actually trying to get me to have my first chemo the same day but they couldn't fit me in.

EricaH

Omaz - I am very concerned about Vitamin D and have been using the Vitamin D spray.   Last blood work day they did a vitamin D test, but I haven't yet received the results.

BTW I read on the Mercola website that you shouldn't wash with soap right after sun exposure as it stops the process of vitamin D absorption.  (That sounds horrid at first blush, but if you shower and only wash the "critical" parts with soap it's really not so bad.)

Lago - Hi and thanks for your response.  My skin is definitely drier - particularly my hands, which feel a bit like an emory board (NICE!!). 

Omaz

ErickaH and Lago - I realize that many people believe that any sun exposure is bad.  Below is an exerpt from an article on the amount of sun exposure needed to get the requirements of vitamin D.  EricaH you could check with your doctor.  I do tan well so my skin handles sun exposure well.  I also go to the derm every year to get checked all over.  I also use moisterizer everywhere everyday as well.

http://www.ncbi.nlm.nih.gov/pubmed/18348443?dopt=Citation

How long should a person be exposed to sunlight to satisfy their vitamin D requirement ? It depends on time of day, season of year, latitude, weather conditions and the persons degree of skin pigmentation. Typically for a Caucasians skin type II living at approximately 42° N in June at noon-time, exposure of arms and legs to sunlight on a clear day between the hours of 10 and 3 pm for approximately 5-15 minutes, two to three times a week is adequate to satisfy the body's vitamin D requirement. The use of sun protection of the face is reasonable since it is often the face that is most sun exposed and sun damaged and relative to the rest of the body based on surface area provides only a minimum amount of vitamin D3.

After the 5-15 minutes of sun exposure, the application of a sunscreen with a SPF of at least 15 is then recommended if the person stays outside for a longer period of time in order to prevent sun burning and the damaging effects due to excessive exposure to sunlight.

 

SpecialK

Hi All,

EricaH - is it not a beautiful day in Tampa today?  I want to lay in the sun too but actually had 3 areas biopsied (all Basal Cell Carcinomas) a couple of weeks ago - have an appointment on Friday for the burn and scrape as long as my counts are high enough, so I have to be extra careful.  I have probably had at least 15 Basal lesions removed over the last 20 years (I'm a California girl and I am old enough that sunscreen hadn't been invented yet!) but it was a little harder to hear that these three were malignant.  I still try for a few minutes of sunlight to keep the Vit D up but it is really a double edged sword for me.  I def live in the WRONG state!

MiriamCecelia - take your pain meds if you can.  I had ear issues too, like sharp earache pain.  It finally went away on about day 6.  I am now a week and a half from 1st tx and feel really good - normal except for some mouth issues.  Make sure your onc knows about everything you are experiencing, and keep careful notes on when your SE's cropped up.

Kathie

Omaz

SpecialK - I would use supplement D and sunscreen with a history of basal cell carcinoma! 

The whole issue of exposure to the sun, sunscreen use, vitamin D deficiency and increased risk for disease is complex.  I don't think we have the answer yet and most likely it will be one of those things which needs to be individually determined. 

SpecialK

Omaz - Don't worry!  Make no mistake - I WANT to lay in the sun but NEVER do!  I have been carved on way too much to add to it unnecessarily.  By a few minutes I mean walking from the parking lot into work, car to grocery store, etc.  I am very careful.  The lesions I have are all from the sun exposure I had in the first 25 years of my life.  I am 54 now and had the first Basal Cell at 35.  I know exactly what to look for and hightail it to the Derm and have them taken care of right away.  They have all been superficial and easy to deal with.  It was just unfortunate timing with the three I have right now.  Right at about the point that they should have been dealt with I was diagnosed so the priorities shifted a bit!  I just had them biopsied right before my first TCH.  Plus my old ins referral had expired so I had to get a new one - slight delay.  Such is life, right?

Kathie