Feeling helpless

[Coramdeo]

My wife just had her first chemo for stage 2 bladder cancer. It has totally wiped her out and 5 days after treatment she is completely exhausted. We took a trip to ER last night as she could barely walk and talk. Ringing in her ears is overwhelming. I’m at a loss as to what to do and it is eating me up watching her suffer. She is talking about stopping Chemo. Doctor said she had 50% chance of survival with bladder removal and added another 5% with Chemo. Her tumour is high grade and I fear it will spread but the  Chemo is so nasty. My heart breaks every second of the day.

[marysue]

Hi Coramdeo:

I’m sorry to learn of your wife’s diagnosis with bladder cancer and rough reaction to her first chemo treatment.  As a caregiver it is really tough to go through the journey with a loved one and yes, you are right you really do feel helpless. You wish that you could wave a magic wand and make it all go away.

While my situation with bladder cancer wasn’t as serious as your wife’s my hubby did have a tough time handling it mentally because for a while we didn’t know how things would go.  We didn’t have Bladder Cancer Canada back then to turn to.  So, you are in good hands talking to us.  Feel free to ask questions, vent etc.  We’ve all been there, done that and many are still doing that.

I’m NOT a doctor, only a bladder cancer survivor and patient support volunteer with Bladder Cancer Canada and therefore cannot give medical advice about which route to take, BUT since your wife’s first chemo resulted in a trip to the ER, I strongly recommend that you and she both talk to her urologist and oncologist (if she has one) about her reaction to the treatment.  Many chemo and/or immunotherapy treatment side effects are cumulative so I suggest having her situation assessed before going forward.  Some people just can’t tolerate those treatments and it becomes a discussion of whether the amount of side effects are worth it in comparison to the extra 5% and/or whether there could be long term side effects/complications that could greatly affect the quality of life. Everyone reacts differently when it comes to treatments. There may be something they can do like give her another medication to counter the side effects or they may change the type of chemo and/or reduce dosages or even stop the treatments.  That would be the second discussion to have with them.

Also, question; has she already had her bladder removed or is this a pre-surgery regime of chemo?

Hope my suggestions help.   (((((HUGS)))))

 

[Coramdeo]

Thanks for your encouragement Mary Sue. This is pre-op Chemo. We will definitely talk to the Chemo doc about the severity of her symptoms. Today we can add tingling in her feet and brain fog that I guess is coming from the fatigue. She has always been active and busy and being wiped out is very difficult for her. Thanks again for your comments

 

[marysue]

Hi Coramdeo:

I wish you well talking to the chemo doc. I have heard of others that have had these side effects.  I had BCG immunotherapy for my bladder cancer since it was not muscle invasive but I still had a lot of fatigue and yes, brain fog.

Brain fog is weird. For me it came and went and gradually got worse as treatments progressed.  It did go away once my treatments were over but it took its sweet time to disappear for good.  I felt like I was heavily drugged (which I was) but the nurses had no answer for it since it was not on the list of side effects for BCG.  When I realized that this was a side effect for many chemo patients I figured that I was an anomaly and it would eventually go away.  I found it difficult to concentrate at times and was extremely forgetful.  I did have to enlist my hubby as my reminder and went through a lot of Post It note pads and more “To Do/Reminder” lists than usual.

I did not have any tingling in my feet.  That is neuropathy which can be a chemo side effect. Definitely make sure that the doc knows about this one.

Learning to slow down while undergoing cancer treatments is really tough especially for those of us that are really active.  What got me through BCG was to remember that the side effects were temporary and my energy gradually returned.  Your wife will have to learn to slow down for the sake of her health especially when she does eventually go for the bladder removal surgery.  The recovery from that surgery can take several weeks even months depending on how the surgery goes and if there are any post op complications.

Now is the time for her to indulge in self care.  Read a lot of good books or if eye strain is an issue, laze on the couch and binge watch a favourite show on Netflix.  On my BCG treatment day and for a couple of days after I indulged in hot baths, extra naps, reading a lot and when my tummy allowed – extra treats like ice cream. I enlisted the help of my youngest son to help with housework – he got a small allowance which helped bribe him but he came to understand this is what he could do to help me get better.  It helped me mentally too, knowing that the household basics were being looked after.

Once I realized that I could let go and let others do the stuff I had been doing and the world wouldn’t end because I wasn’t the one doing it, it got easier.  The loss of control over our lives is one of the biggest mental frustrations with cancer. We are so used to being busy and flying along and then when a cancer diagnosis happens it is like “What the **** just happened here?” Finding things to help alleviate her worries/concerns will be helpful, no matter how small they may be.  ((((HUGS))))

[patrikjo]

Thanks for the good suggestions and reviews. Keep well.

[Joe]

Hello Coramdeo,

It breaks my heart to hear difficult time your wife is going through and I can feel your heart ache pain.  Like marysue, I am not in medical profession but I am involved in a bladder cancer patient support group so I have met several people who removed their bladders.   I am not a bit comfortable of how your doctor is communicating you about your wife’s treatment.   Especially, he just said 50% survival rate and add 5% if chemo.  Maybe he explained further.  Anyway, the doctor  has to explain in detail if he or she is going to say a certain number.   50% of what?  Is it 50% after 1 year or 5 years survival rate?   I will write down what I understand. I do not mean to just list out the numbers to make you feel good.  You  may know some of data already.

1. What the surgery your wife will have is called Radical Cystectomy (RC) to remove her bladder.

2. Stage 2 bladder cancer is the cancer which has progressed into muscle layer – call muscle invasive – but not to the fat layer.  There are two more stages, namely stage 3, which is when the cancer has progressed to the fat layer, and stage 4, which we also the stage as metastasized, which the cancer has penetrated the fat layer and is has spread outside of bladder to other parts of the body.

So, if your wife is stage 2, then technically speaking, if her bladder is removed there is not longer a source of cancer cells and she is not supposed die from bladder cancer.  For clarification, some doctor said no one die from the original cancer.  People die from other organs failure which was metastasized by the original cancer.

3.  About Chemotherapy:

Your wife is going through neoadjuvant chemotherapy

Recent recommended protocol for Cystectomy  is to have neoadjuvant chemotherapy. Neoadjuvant chemotherapy is to have chemotherapy before Cystectomy.  Memorial Sloan Kettering Cancer Center in New York is well known cancer center.  I often see people referring the cancer center in Bladder Cancer Advocate Network discussion forum.  I read an article from two doctors of the cancer center which is dated May,2014.  It says ” Positive results with Neoadjuvant Chemotherapy” on bladder cancer patients.   One clinical trial – EORTC-30864 indicated a six percent increase in ten year survival.  The other trial INT-080 showed 14% absolute improvement in five-year survival.  In both cases, the toxicities of chemotherapy did not make surgery more difficult or increase the risk of postoperative complication.  So, it sounds like it will increase the survival rate.

I have heard a well know urologist in Canada says that when a patient cannot tolerate neoadjuvant chemotherapy, they opt to postoperative chemotherapy. But, the reality is that Cystectomy  is a major surgery, many patients cannot tolerate chemotherapy after the surgery so they simply stop the postoperative chemotherapy.

Please note a few patients I know had Cystectomy fairly recently had neither neoajuvant nor postoperative chemotherapy.  I have heard it happens in more in local urology clinic/hospital.   So, since your wife is going through neoadjuvant chemotherapy, she must be being treated in a hospital which has cancer centre also, which is good at least.

But it is tough one for both of you to decide to increase the survival rate and the painful process your wife has to go through and you cannot help anything.  I emphasize what you go through.  I believe many readers in this forum are feeling the same.

4.  50% survival rate

There was a research done in Germany in 2004.  I am sure things were much improved since then.  Anyway, The title of the research paper is Survival Rates After Radical Cystectomy  according to Tumor Stage of Bladder Carcinoma at First Presentation.  They examined 230 patients who underwent radical cystectomy  of bladder cancer from 1992 to 2002.  The result showed progression free survival and overall survival of all 230 patients was 54 and 50% respectively, after 5 years.  So, the comment (50%) by your doctor matches to the result, provided if he explained to you it is after 5 years.   The report continues to say that the best result was a 74% progression free 5 year survival rate with organ-confined, lymph node-negative tumors (106 patients) compared to the progression free 5 years survival rate of 50% for non-organ-confined, lymph node-negative tumors (64 patients).

Anyway, if your wife’s cancer was diagnosed as Stage II, which means the cancer is organ-confined.  Please note that Stage III is still organ-confined.  So, it looks like your wife has 74% progression free 5 year survival rate according to this research paper even without going through neoadjuvant chemotherapy because  I do not think there were no practice of neoadjuvant chemotherapy in 2004.  But it seems that  it improves the survival rate higher if she can tolerate the current therapy.

5. Immunotherapy

When the cancer came back to other parts of body after a bladder was removed, the first line of treatment is chemotherapy.  When that did not work, we did not have much options. But, in the past few years, there were so much research and development have been done, this time many big pharmaceutical companies have invested in immunotherapy.  And actually there were several immunotherapy drugs for bladder cancer being approved by FDA and I think some by Health Canad.  I know a patient who has been treated by immunotherapy when his chemotherapy did not respond.  The person looked very fine to me.

The only thing I can say to relieve some of agony and  pain you have by  seeing what your wife is going through and a sense of helpfulness you feel is that maybe her prognosis is not as bad as her doctor said and there are new treatment available already and I know more are coming to treat late stage bladder cancer patients.  So, please hang in there.  We know what you are going through and we are all praying for your wife and you.

Joe

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[Joe]

Hi Coramdeo,

 

I forgot to mention one very useful information.

Bladder Cancer Canada offer so called Peer Support.  If you call Bladder Cancer Canada 1-866-674-8889 and leave your message, someone will give you a call and then arrange someone who had gone through similar situation, including someone who actually had Radical Cystectomy to talk with you if that is  what you want.  I used this service myself when I was first diagnosed with bladder cancer.

Joe

 

 

[Coramdeo]

Thank you Joe for your encouraging words

 

[Author]

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