Herceptin - Bladder and/or sleep changes?

[Karen Wheel]

I have read a bunch of old threads but haven't seen anything (yet) on these issues - so want to ask if others have had these issues when on Herceptin?

At first - I was blaming the chemo (took 9 weeks of Navelbine) but I've been off for two months and the side effects are still here.

1) Bladder - it seems messed up - they say no infection, but feels strange all the time and I do drink a lot of water (on veg diet so not drinking ANYTHING bad!) only fresh fruit and veg juice from my juicer --- or water. However, I go every hour or so to the bathroom and feels like I have waited 5 hours --- it is strange! My oncologists have done two separate urine tests and now are sending me to a specialist to do an exam and ultrasound.

2) Sleep. ARGH! I used to sleep like a baby. Now I dream and dream and dream and when I wake up (1-2 times in the night to pee ugh- other problem) but I can remember a mass of strange dreams - like I have done some sort of long rushed vacation, or scavenger hunt in my sleep. In the mornings I wake up and feel exhausted from the nights events (of dreams). THANK GOD - I haven't had hardly any scary dreams - but it is still making me slightly nuts.

Any of you have these symptoms???

Thank you in advance!
Live Long!
Karen

Age – 44 pre- menopausal
No children – no pregnancies
2-09 – Biopsy – Cancer
3-09 – Partial mastectomy Right – 3 nodes taken but not involved
Tumor results: 1.5 cm – Stage 1 - Her-2 +++
Estrogen positive 80% - Progestin 10% - Ki67 postive 30%
4-09 – Started Herceptin (for 1 year every 21 days)
4-09 – 6-09 Chemo – 9 weeks of Navelbine
7-09 - 30 sessions of radiation (almost finished!)

[Yorkiegirl]

I do know that I had trouble with sleep. I still have trouble with it because of these darn night sweats. When I got put into chemo pause it really did a number on me and has continued. So much so, I'm considering begging for some HRT.

[Rich66]

My mom has had sleep disruption and repeat visits to the bathroom with sense of incomplete voiding. Negative for urinary tract infection as well.

[juanita]

sleep? what's that? and the bladder problems i've always had.

[schoolteacher]

I am having the same problems with using the bathroom.

I do not wake up as often a week and a half after Herceptin infusion.

Amelia

[Jackie07]

Karen,

How's your sleep now?

I'm thinking that your sleeping problem (dreams) was related to your bladder problem, which sounded like was related to your fluid intake. I would suggest be sure to empty the bladder and not to drink too much fluid before going to bed.

If things are not improving, I would suggest getting a CT of the brain.

[Karen Wheel]

Wow - okay - good advise all! I just got back from being on vacation at the sea (my reward for finishing radiation!) but the docs found a bladder infection (slight) and I did antibotics for these last two weeks ... not feeling much better - but need not now ask the docs to do these scans and also test my kidneys after I saw Dianne's thread on kidney numbers declining....

UGH! I'll keep you guys up to date. But I still sleep for "CRAP!" and it is because I wake up every hour or two and never seem to get REM sleep .... so I feel tired all the time, even when I do sleep more than 2-3 hours I dream all kinds of weird stuff ---ugh! I again, wake up exhausted and just thinking - why can't I just sleep --- like the old days!???!?!!!!

Karen

[Karen Wheel]

Jackie - one more thing.... why do you suggest a brain scan with the bladder acting up - or is the non- sleeping issue?
thanks - Karen

[Jackie07]

Karen,

I wrote a detailed reply - but it vanished (timed-out) after my husband had interrupted me several times. He's trying to find out where a Bible verse came from (I Corinthians 13:11.)

So here I try again.

I had bladder control problems since I was little. When I became a 'woman', I always had bad cramps, bad pimples, and very underweight. When I was 29, while my health was quite bad, I found a book talking about how many of the 'sleeping problems' are related to painful periods. It stated that most women with the problem had a history of bed wetting in their childhood.

Finally when I was 30, we found out I had had a life-long brain tumor which explained why I quit 'high jump' after 10 grade and why I often had pressure in the back of my head when I did the 'jump shot' playing basketball. It explained why I couldn't stay alert during class and why I did most of my studies lying in bed.

That was 1990. I started to sleep like a baby; I gained weight (18 lbs); my facial skin became smooth; I no longer had athlete foot...

Since then, I've had another brain tumor surgery (Gamma-knife in 2001) and two breast cancer episodes. I experienced the same problems every time - way before my doctors could figure out what's going on because they alway like to believe that I was stressed out, that I needed to take antidepressant, that things are just 'in my head'...

They are the experts, we can't argue with them - especially when my case is one out of a million... It's all in our genes - coupled with bad environmental factors.

Everything could also be explained by our experiencing the menopausal symptoms... But one can't be too careful.

[Karen Wheel]

wow - interesting....

I have only slept crappy since I started chemo (tried to blame the chemo) but stopped that months ago and still sleep crappy! So, thinking it is the Herceptin, which I have taken almost 6 months (so half way finished!) ...

I'll ask my doc about the scan....

thank you!!!

You should read my health guide --- it rocks! A Cancer Battleplan Sourcebook, by David Frahm... it really explains how to clean the body and free us from cancer - or in my case from getting it again! Very powerful stuff and it explains how to actually DO it!

Karen

[jplanner]

What can you tell me about pH and cancer

[Karen Wheel]

Lots.... to sum it up ... cancer can not grow in a pH neutral environment .... all who have cancer have an acidic system (you can check it) and probably most americans in general have acidic pH to their bodies... because of diet.

I have a ton of info --- send me an email to: wheelistic@yahoo.com and I can get you more stuff.

:-) I am not a "poster child" yet for this, in regards to Her2 survival, however I plan to be in the future - as I believe that this portion of my plan (along with the medical cure) is probably the most important for my overall survival rate!

Karen

[margiermc]

I had trouble sleeping ever since I was told breast cancer, then stage 4 - I'm not sure if it's herceptin or nerves, but I take an ativan at night to relax. Night sweats, I went into menopause, so can't tell if it's either that or herceptin.

margie

diag. dcis 08/08
liver met 10/08
tch - 10/08-2/09
her. - 3x
vaccine 6/09 to present
ned - blood normal

[Becky]

Also remember that chemo puts many of us in a menopausal twilight (sometimes permanent and sometimes now but definitely reduces ovarian activity and estrogen) and some ER+ women are also on drugs for that.

That said, a major side effect of menopause and waning estrogen is bladder infections. The bladder and vagina have millions of tons of ER receptors and need estrogen for the cells to become mature. Immature cells = bladder wall weakness and vaginal atrophy.

This is probably the cause for bladder issues more than herceptin itself.

Urinary tract infections are a reported side effect with herceptin (I believe the number I read was around 5%). I was one of that group, I had 5 or 6 of them while I was on it.

Hi,
I ve been thru it all .
diagnosed last march with breast cancer.
Her2new positive.
had 6 months chemo.
left masectomy and 9 nodes removed.
radiation.
now finishing up on herceptin- 2 left.

I keep getting bladder infections. Im scared !
having a test on March 12 th to scan and wash out bladder and check for cancer.

Does this sound familiar?
jhsullens@comcast.net

[Karen Wheel]

I have found that my bladder issues are getting better, but I am staying really strict to my diet of keeping my pH in the central zone --- 7.0 to 7.5. Also I took a huge amount of "D-mannose" which is a natural product. The best brand I found is made by Pure Encapsulations which seems to be the highest concentration and in a powder form and worked better than the capsules that I had tried. I had problems most of the summer and finally later in the fall then they just went away.

I'm not thinking it is the Herceptin, as I am still on it. So, thinking in turn it was some sort of effect from the chemo. More so, my opinion is that when I was undergoing the chemo my body was in more stress and stress is a big factor in bladder issues. Also, I wasn't eating strict on my vegan diet, and not taking all my vitamins, as my doctors said they didn't want me to.

Also, I have read that Vit C helps with Bladder infections - and I am taking about 7,000 mg per day (powdered form) so I think that is also helping me not get any more bladder infections.

On the sleep issues - (again) - "Pure Encapsulations" - Melatonin (20 mg) - which I found in November (my mom brought a bottle when she came from the US) and it really helped! REALLY! I ran out and thinking I could just buy Melatonin here in Italy - I searched and I found they only sell it in 3mg dosage. More mg is all they say is legal to buy here without a prescription. So I tried the lower dose (even 2 and 3 pills) but didn't work for me. I ordered more from the US - and mom sent them in a card .... somehow they snuck thru customs and I'm back in Melatonin! I am sleeping better every night (it takes a few days to get a build up in the system).

So --- thats my update. Hoping this is the last I see of these problems.

And... hope this helps some of you out there.
:-)
Karen

[Nina]

Karen - Why did you use navelbine with herceptin instead of the normal routine of TCH? Why did you refuse hormone therapy? Please explain your strategy and how you worked with your oncologist if what you wanted to do was not what the oncologist recommended. Thanks! This is all new to me and I am tempted to just do whatever my onc says because she is really good and I want to be as sure as I can to be around to see my grandchildren grow up. Also I am very interested in your vegetarian diet.

[Karen Wheel]

Nina -
First - I live in Italy (am American) but I moved here to be with my fiance (met him on the street in Rome!) yah, great story, but 3 years in I found out I had cancer. So --- dealing with cancer in another language - well is a bummer! My oncologist speaks some english (but not that great and always seems to revert back to Italian with me) so.... I had to write everything down (even tape recorded some meetings with doctors) then came home and looked up the drugs and therapies on the internet to read about them in english... (side note ---LOVE FREE HEALTH CARE!!!!)

I chose navelbine as I read up on all the "options" my oncologist here in Italy gave me for chemo - as I wanted the Herceptin and no chemo. She said I had to do a "chemo" so gave me 3 options (don't remember the names but can find them if its helpful as they are in my file) - but gave me 3 different options - for the chemo. 1) most effective 2) medium effective 3) least effective
Navelbine was in the 3) catagory - so I originally thought I would just take the "middle" of the road --- however I read about each of the drug options - and there were a few that had things that made me say --- no way - like one on the "medium" list had heart issues as a bad side effect and I thought it would be a double negetive with the Herceptin. Then I found several articles that praised the combination of Navelbine with Herception - saying that using them "together" had the same results as a heavier - more effective (and more TOXIC) chemo. For me it was a NO brainer. Granted I was stage 1 and lymph nodes were clear - so I felt I needed to just combat the Her2.

For homone therapy - same thing --- my doc says it is the "normal" thing to do and that it surely will prolong my life --- but I have yet to find a really positive article that says that "X" drug seems to work well for those with HER2. Most articles I found say that ".... Her2 seems to be resistant to hormone therapy" --- I have googled and searched and searched and yet to find one --- so if you girls out there have a really positive article - I'm all for it! Also --- being premenopausal - there is another type of drugs and I think the post -menopausal drugs have better results with hormone therapy - AI's I think they call them.

I am seriously thinking of begging my doctor here to just take the overies out --- and still not do the drugs.

Also - I am doing a huge diet and nutritional approach with the Herceptin - and modern (west) medicine that I am doing - as I don't want to just leave it up to drugs ... Fundimentally I just don't like the thought of adding one more chemical (with side effects) into my body for my body to deal with... even if I am afraid of this Her2 beast. "chemical" menopause just sounds like something that isn't that great to do --- so I am still not doing "anything".

I want to do everything I possibly can to NEVER see this beast again in my body. So, became a vegan - and am watching my pH and taking a huge amount of supplements ... juicing and doing exercise and yoga... hoping that in 5-7 years I can too become a poster-chick for surviving long term (with no other cancer or chemo) because of diet.

I hit my year mark the other day --- ! ;-)

I have a ton of information on pH and diet - and books and web links if you want - email me and I'll send them to you ---
wheelistic@yahoo.com

:-)

Karen
PS - since you haven't started chemo - search google for Navelbine and Herceptin - you can find the articles and read them. They use it a lot with Herceptin - and you have very similar stats to me --- size and results. I had a 1/4 mastectomy (think they took more though!) but I'm thrilled as the margins were clear and I still have enough I don't look too lopsided!
Oh, and I didn't get that sick ---yah felt like crap - but didn't lose my hair! And that really was a nice thing as I would have just hated to lose my long hair --- I know we all deal with it - but it really helped me stay a bit more positive when the situation was really sucky back last year in the middle of all the discovery of having cancer.

[ElaineM]

Have you considered cranberries or cranberry juice for the bladder? It is an old fashioned remedy for bladder infections. Bladder infections can be caused by bacteria that sometimes gets into the bladder and causes an infection. Be sure to drink alot of water during the day. Water helps to flush out bacteria. Of course you may want to drink less water before bed time. Have you tried warm milk before bed to help with sleep? If that doesn't work a supplement called Melatonin might help.