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Old 03-02-2014, 09:04 PM   #1
Lovemyboys3
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Join Date: Aug 2013
Location: Texas
Posts: 61
Seriously, A new side affect. UGH!

Ok Ladies, Can someone tell me what is happening to my body. I am 33 years old and having crazy hot flashes, acne, body/bone aches and now bladder control issues. Certainly don't feel 33 that is for sure!!!
I have had the hot flashes for most of the time during chemo so that is not a huge problem. The painful zits I haven't had since I was a teen so that is a pain but not to bad. The muscle/bone pain I somewhat expected because of the herceptin. Its tough but I can handle that as well. Its the bladder control issues that are new and I am really having a problem with. I am about 4 weeks POST chemo and it seems to have come out of nowhere. Is this just a delayed chemo side affect? Menopause? Or could it be something more serious? After everything the bladder issues are the worst! Is this common? Has anyone had this issue? I am going to see my doc on Thursday so I will certainly talk to her about it but wanted to get others opinions.

Never thought I would ever be talking about bladder control on a forum. Cancer certainly takes the modesty out of many things! :-)
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Lovemyboy3

6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.

11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.

11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/


16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
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Old 03-03-2014, 04:57 AM   #2
Aussie Girl
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Posts: 260
Re: Seriously, A new side affect. UGH!

Dear LMB3,

At least some of this is likely chemopause.

Firstly - It can take some time to get over the muscle/ bone pain from the chemo and Neulasta and some people get it from the herceptin too, although it is often less intense. Make sure you have pain relief - I found ibuprofen (nurofen, advil ) was enough for me. Warm baths/ showers and exercise can help you get going.

The hot flashes are chemopause. The bladder problems may be too, but you need to be checked by your doctor for infection etc. Because of your age, you may start ovulating again after a few to several months which helps+++. Bladder control problems are very common, but not talked about much.

In the meantime I suggest you ask for vaginal estrogen - it is safe for breast cancer patients despite what it says on the packet insert. Your cancer is ER neg anyway. This is important not only your intimate life but it also helps bladder function. You also need to strengthen your pelvic floor muscles (look up on the net.) Those muscles are critical! Try not to sneeze or laugh! The pads available now at the supermarket are pretty good now.
Also, there are some special machines that some gynecologists or some physical therapists have where you sit on this special chair and electric currents stimulate your pelvic muscles. Sounds bizarre, but it works for the bad cases.

Hot flashes are the pits. I had them constantly from midway through my chemo. The vaginal estrogen is not enough to control them. Mine are diminishing in frequency over time. Wearing layered absorbent (cotton) clothing that you take off as needed helps, as does a swig or two of ice water when you feel on coming. There are a few non-hormonal treatments such as
  • Venlafaxine (Effexor, Pristiq)
  • Paroxetine (Paxil, Pexeva)
  • Fluoxetine (Prozac, Sarafem)
  • Gabapentin (Neurontin, Gralise)
You'll only need these if you find the flashes distressing. These therapies work fo some and not others and all have side effects.


I found the sleep disturbance the worst and have a very low dose of Mirtazapine (Remeron) at bed time to help me sleep. This is less addictive than Ativan and doesn't have withdrawal effects. I can cope with the flashes during the day now.


Good luck with this.


Aussie Girl
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31mm Infiltrating duct carcinoma
Grade 3, ER/PR-, HER2+, Neg Sentinel nodes x 5
49mm field of DCIS
17 June '13: Screen detected impalpable mass, Mammogram neg, US.
25 June '13: Diagnosed after multiple biopsies and MRIs
28 June '13: Left lumpectomey
4 July '13: Left Mastectomy
12 August '13: Commenced TCH chemo
Mid December '13 : TCH finished. Herceptin continuing three weekly.
4 August 2014- Herceptin infusions finished.
END OF THERAPY - YAY!
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Old 03-03-2014, 09:27 AM   #3
IrvineFriend
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Location: Irvine, CA (Southern CA)
Posts: 414
Re: Seriously, A new side affect. UGH!

I had bladder issues as well. Had so much going on, figured it was the chemo/radiation. I haven't noticed that problems for a few months now. Out of the blue, I'd start leaking and have to change. Curious what you doctor says.
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Julie
Live in Orange County, CA

Diagnosed with DCIS Oct. 2012

Bilateral Dec. 19, 2012
IDC, ER/PR-, Her2+++, Grade 3
Stage IIIa
15.6 cm
4/14 nodes + macrometastases
First thing each morning, I try on my bathing suit. Then, nothing worse can happen the rest of the day.
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Old 03-03-2014, 10:05 AM   #4
Becky
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Location: Stockton, NJ
Posts: 4,179
Re: Seriously, A new side affect. UGH!

I agree with what Aussie Girl has said about the bladder. The bladder has ER receptors on it and suffers during periods of low estrogen - in your case and many of, during chemo the ovaries either shutdown or are in suspended animation. This leads to either leaking or UTI (infections) because the bladder walls thin due to lack of estrogen (same happens to the vaginal walls). You can either use est-ring or another product or just wait it out. Due to you age, you should resume your natural functions (menstruation cycle and normal hormone levels etc).

Are we having fun yet?
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-03-2014, 10:23 AM   #5
Lovemyboys3
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Join Date: Aug 2013
Location: Texas
Posts: 61
Re: Seriously, A new side affect. UGH!

Thank you ladies. I actually am scheduled for my second phase reconstructive surgery tomorrow and will ask for a UTI test just to make sure. I don't know if they will let me have the surgery if I do have an infection. I have had them many times before so I know more or less what that feels like and I am not really having any symptoms of a UTI other than the badder issues. But you never know.
I will certainly post back after I speak to my doc regarding this issues. Its a real pain and so very embarrassing but I have put that aside as my health is valuable to me. I don't blush anymore about really anything. I just want to make sure I listen to my body and ask questions.
Becky - This is all just so crazy! LOL! Our bodies go through so much its hard to wrap my brain around it sometimes. :-)
__________________
Lovemyboy3

6/27/2013 - Diagnostic Mammogram due to a tiny lesion found.
6/27/13 - Diagnosed with Breast Cancer at age 33 :'(
07/11/2013 - Surgical needle biopsy
07/15/2013 - Path report results from biopsy - DCIS with micro invasion, Pagents disease - ER/PR- Her2+++
7/26/13 - PET Scan CLEAR!!
8/19/13 - B/L Mastectomy w/DIEP Flap reconstructive surgery. Nodes removed clear!! Stage 1A. Positive Margins remaining
8/23/13 - Finally HOME from the hospital
9/10/13 - All drains out. YEAH!!
9/6/13 - 2nd Surgery to try and remove remaining positive margins. Port placed.
9/11/13 - Path report shows all tissue samples are neg. Clear Margins!!
10/3/13 First TCH treatment - Horrible amount of side effects.

11/10/11 - First weekly Herceptin treatment.
10/11/13 - Late night ER visit due to Neutropenic fever - WBC at 0 in the hospital.

11/17/13 - Ultrasound on left breast due to pain. Benign findings: Oil cysts and possible Fat Neurosis from reconstructive surgery.
11/24/13 - Round 2 TCH treatment.
11/25/13 - Neulasta Shot given. Side effects minimal. Woo Hoo!
11/27/13 - Said goodbye to my hair. :-(
01/14 - Mammogram and Ultra sound - CLEAR!
01/23/14 - Last scheduled Chemo! WOO HOO!
03/04/14 - Phase 2&3 reconstructive surgery DONE!
03/06/14 - 2 days after surgery and 1st Herceptin only treatment. Minimal side affects.
03/14 - Began having pain and weakness in my feet and legs. Doc thinks it is delayed side affects of chemo possibly Neuropathy. Could even be the Herceptin (what ever it is I would appreciate it if it went away :/)
03/14 - A little over 8 wks post chemo and hair is about 1/2in long. :) Not a whole lot but its getting there. Eyebrows are taking there time but are coming in nicely.
04/14 - Where did my eyelashes go? :/


16 Rejoice always, 17 pray continually, 18 give thanks in all circumstances; for this is God’s will for you in Christ Jesus.
1 Thessalonians 5:16-18
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