Tips for Managing Side Effects of Treatment

[theresab]

Hello BCC Community. At the BCC Helpdesk, we receive many questions about tips for managing or minimizing the side effects of BCG, Chemo and Radiation. Does anyone have any suggestions, tips or tricks that worked for them?

[SJay]

I found the best thing for me was to keep doing the things I like doing, just doing them a bit less, a bit more slowly and with more breaks. Get some exercise even if it is just walking a few blocks. Staying active in spite of any tiredness or discomfort helps you to keep a positive attitude.

[marysue]

Hi theresab:

My experience is with BCG treatments.  Here is what I did for the following side effects.

Headache, muscle ache, joint pain, fever/chills – Tylenol, hot baths or showers. cuddling up with a hot water bottle, nap when needed.  For severe chills, muscle/joint pain and high fever contact your doctor as this could mean that the BCG is possibly going systemic and if that is the case you will need to be admitted to hospital for treatment.  This is usually fairly rare.  Most of us feel like we have a good dose of the flu and symptoms subside in 24-72 hours.  If symptoms do not subside by then, you should be talking to your doctor before having the next treatment.

Fatigue – nap when needed- fatigue lessens once treatments are finished.  I found getting out in the fresh air and going for short walks as able did help me feel better and also lifted my mood.

Brain Fog/Memory/Concentration Issues: Some people like myself experience brain fog/memory/concentration issues especially after several treatment sets.  Not much can be done with this but allow yourself some latitude remembering that you are being treated with a powerful drug.  This side effect lessens once treatments are finished.

Bladder irritation – drink lots and lots of water, herbal teas, apply heating pad or soak in warm bath.  Avoid caffeine as it irritates the bladder when doing BCG treatments.  If you are in pain take Tylenol and/or Tylenol and Advil combined.  Check with doctor if bleeding and/or pain is really bothersome before having next treatment and for whether NSAIDs are right for you.  Some people like me have experienced severe bladder inflammation and that may require a conversation with the urologist about lowering the dosage of the BCG or a change in the treatment schedule.

Lack of Appetite/Nausea:  Stick to light diet of soups, nutritious shakes, smoothies, eggs, bananas etc.  Basically the BRAT (Banana, rice, apples, toast) flu diet. Some people do lose a little bit of weight during BCG but regain it once treatments are over.  I usually lose 5-7 pounds but put it back on once I finish treatments and am eating more.  The odd person does experience more nausea and even vomiting.  If that happens you will need to contact your doctor for a prescription.

Constipation: ask about which laxative type supplement/medication is right for you.  I was recommended to take Senokot S (the one with the stool softener)  I have also found Metamucil helpful. For some people BCG has a similar effect on the digestive tract like IV chemo does.  You may develop an irritated bowel. I did.  I found eating Greek yogurt and taking a good probiotic like Align really helped my stomach/digestion feel better. Digestive irritation will let up once treatments are finished.

UTIs: UTIs are a common side effect with BCG treatments due to all the intrusions into the urethra.  Unfortunately for most people it will require a trip to the doctor for an antibiotic to clear up the infection.  You will need to stop BCG treatments until the infection is cleared.  In the meantime, drink lots of water, cranberry juice, herbal teas to help flush out your bladder.  You can take Tylenol for bladder pain but check with your doctor first to make sure that this is right for you. There are bladder health care products available in health stores but do your research and check with your doctor before taking them especially if you are on prescription meds for other health conditions.

Yeast Infections: Another common side effect for women.  I usually experience both a yeast infection and UTI together.  For me Canesten or Monostat works to get rid of the yeast but I recommend contacting your doctor if you keep getting repeat infections.  Watching the amount of sugar/sweet foods that you consume plus taking cranberry pills and drinking lots of water work for me.  Also, if you need to wear bladder protection pads change them out often or reduce wearing them if possible like if you are at home and it doesn’t matter if you leak a bit.  Do not resort to douching.  That will increase the risk of a UTI and/or increase the irritation of your lady parts.

Irritated Lady Parts: BCG is very acidic and some women (including myself) find that when voiding out the BCG it backsplashes onto the genital area and can cause irritation.  I found pouring cool water over my genital area as I voided helped weaken the acidity of the BCG.  I followed that up with washing my genital area with a mild soap, rinse off well and apply a diaper cream if needed.  One cream that is very useful is Calmoseptine.  I get it from the pharmacy called The Medicine Shoppe here in Calgary but I believe it can be ordered online.

Peri and Menopausal Women – If you are going through BCG treatments while experiencing menopause symptoms it is possible that BCG treatments may intensify the hot flashes and night sweats.  That happened for me.  I did ask my urologist and GP about taking HRT but they didn’t recommend it as they felt it was contraindicated while doing BCG treatments.  They told me that I could consult an OB/GYN once my treatments were finished.  HRT was getting a bad rap in the news at the time.  For any women today that are experiencing severe menopause symptoms while doing BCG I would strongly recommend getting a consult with a good OB/GYN and have them connect with your urologist/uro-oncologist to see what options may be available for you. I took the hard road and just rode it out.  Acupuncture and yoga did lessen some of the symptoms.

Mental Health:  Many people including myself find that you get depressed while doing treatments.  Talking to others either online/through a support group/peer support person – reassurance from others that what you are feeling and experiencing is normal goes a long way to helping you get through it, treating yourself to a small treatment after each treatment helped me, taking time for myself i.e. reading good books. Getting through several sets of treatments is challenging particularly if the side effects are increasing.  Seek professional counsel if needed.

Getting through a series of BCG treatments is not easy and definitely no joke.  I found it best just to take one stage/step at a time and not get too concerned about making too many plans for the immediate future.  When talking to others as a PSV, I have found that one of the biggest struggles for people is to learn to slow down.  People get so angry and frustrated that they can’t go on as normal.  Some people can do more because their side effects are less and lucky them.  The other question I get asked all the time is, “How bad will my side effects get?”  I always tell people that you will not know until you do it as the side effects vary widely for everyone. I don’t have a crystal ball so I can’t help you predict. (I do wish that I had that superpower believe me).  Some people experience few side effects, others like me experience a lot.  Most people land somewhere in the middle.  I usually tell people to be prepared to slow down at least some and consider the treatments as a necessary part of the healing journey and to remember that it is only temporary.  You may or may not need to take time off work or at the very least reduce your work schedule.  Again, that will depend on the amount of side effects that you have and the type of work that you do.  Make your health the priority.  You will get through the treatments better if you accept the fact that you need to take time for you and that it is okay to slow down, take a break and ask for help if needed.

If there is anything unusual going on while doing BCG treatments get it checked out.  It is better to be safe than sorry.  It could be related to the BCG treatments or it could be another as of yet undiagnosed issue.

These are my thoughts at the moment.  I hope that this information helps.  (((HUGS)))

[Alivan]

This is very helpful, thank you.   The patient guide from Bladder Cancer Canada says the side effects of chemo are very similar to BCG.  Do you or anyone on the forum know if this is the case with all types of chemo?

My urologist’s locum has recommended intravesical chemo for my non-muscle invasive bladder cancer.

I’m looking for advice on the efficacy and side effects of this treatment given my circumstances.

Two years after my diagnosis and TURBT procedure in May 2021, the doctor has recently found “2 tiny foci of papillary change” in the wall of my bladder twice over 4 months (June and October 2023).

Thanks.

Alison

 

[marysue]

Hi Alison:

Side effects for chemo instillations are pretty similar to BCG treatments from what I’ve heard.  There are different types of chemo for these treatments.  The most common are Mitomycin C and the new combination of Gemcitabine and Docataxcel (sp?) which are given at the same treatment time.  GEM/DOC as it is often called is given one drug at a time – one drug is put in the bladder for about an hour, drained out and then the other is instilled for about an hour.  Efficacy of GEM/DOC I’ve heard is quite similar to BCG.  This treatment regime was started when there was a drastic shortage of BCG.  Mitomycin C has a reasonable track record but not quite as good as BCG.

BCG is generally the gold standard for high grade bladder cancer.  Chemo instillations like Mitomycin C are often given as a single instillation immediately after a TURBT surgery for low grade bladder cancer.  BCG can be given for any grade of cancer that is recurring frequently which it looks like it might be starting to in your case.

As for the best type of bladder instillation in your case, that is a conversation to have with your urologist.  If you are given a choice of different types of instillations you would need to ask questions about the pros and cons of each as they pertain to your situation.

If you haven’t already done so, you are welcome to join our women’s only group that meets online on the first Wednesday of each month.  Our next meeting is November 1st 7PM Central Time.  If interested you can email my co-facilitator Angela Pelletier for zoom details at angelap@bladdercancercanada.org.  We have some women in the group that have done the GEM/DOC treatments.

I hope this information helps.  ((((HUGS))))

[Alivan]

Thank you Mary Sue, this is very helpful.

I will definitely be at the next meeting of the Women’s only group on November 1st, and have emailed Angela.

Thanks,

Alison

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