Was hoping for some advice for my mother, who as I previously posted, is in the middle of her chemotherapy (3 rounds of paclitaxel/carboplatin) and who recently had an aborted debulking surgery after it was found there was a tumour sitting on her large intestine that would make surgery too dangerous at the moment (doctor wants to look and see after 6th treatment). She is currently recovering from the incision, but with the combination of chemo and now the wound from being opened up, she is really struggling with her care: she is more physically drained than ever before, often feels like giving up and is under immense emotional distress, and feels like if she takes any more chemo right now she might not survive.
We will be consulting with her oncologist and hoping for referrals for her care; but in the meantime, she has gone to a naturopath and has been recommended a whole host of treatments that she hopes will help her improve her overall health (including, for example, large injections of B12 and other supplements to help with cholesterol and boost immune system etc etc). She does not view these as alternatives to treatment but as means to help her body to recover so she can manage more chemo. In this context, I am a bit frustrated that she is not willing to do this in consultation with her oncologist/primary care team, as I am worried the recommended treatments may come into conflict with her chemo in different ways that are unpredictable. I have tried to encourage my mother to let the doctor know her plans with the naturopath, but she is very resistant to this as she feels the oncologist has already 'closed her mind' to other treatment plans (even though this is not being viewed as an alternative to the primary treatment). I find this really distressing, but I can't really push further as it is causing my mother distress when I do, as she really doesnt want to tell her oncologist.
I am not sure what to ask here, but I would be grateful for any advice.
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kcha237
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tl;dr: To keep it short, my mum wants to undergo various treatments/infusions with a naturopath to help her body get stronger as she struggles through chemo (NOT as an alternative to it), but doesn't want to tell our oncologist as she feels the oncologist is closed minded towards other forms of complementary health treatments. I am worried that doing this without cooperating with her primary care team is dangerous.
Bit of background I’m 2 yrs post dx 19 months post chemo. I told my consultant during a check up yesterday that I found evening primrose oil was taking the edge off of my hot sweats whilst I am waiting for a menopause specialist appointment. She immediately told me to stop taking them as they can emulate estrogen!
I never dreamt EPO could be potentially harmful to me, so 100% your mum must tell her oncologist what she intends to take. They might say it’s fine but she has to be sure.
Best wishes for your mum and I hope these symptoms ease soon xx Jen
thank you. Its frustrating, the naturapath recommends things like nicotine patches, amino glutamine, and agrimseng (which costs thousands of dollars) and I tried to explain to her that I was worried about how these things might affect her or interact with her primary care treatment; but trying to convince her to tell her oncologist is an uphill battle and we are both getting extremely distressed trying to convince each other that it is ok/not ok to do this without informing the oncologist. I dont want to create more hurt and upset, I know she is really struggling, but I don't understand her distrust at all, she seems convinced that if she tells the doctor that she's going to do this with or without her approval, the oncologist will 'stop trying to do her best' to help her. I just don't know how to be a support person in this situation, i can't get behind her desire to go behind her primary care team's back
It sounds like your mum hasn't given up, if she is seeking alt treatments she still wants to get better. Chemo and surgery are grueling. You can feel helpless and out of control.
Regular gentle physical activity and a diet with lots of whole foods can help. As well as activities like journalling which can help deal with the anxiety that comes with having cancer. It can also be something your mum will feel like she can control and can do to help her own healing.
Can you suggest she gets a consultation from a nutritionist and trainer who specializes in cancer? There are studies that show that physical activity can help people get through chemo.
Would your mum consider a second opinion from a different oncologist? If the reason she won't tell her current one is that she doesn't have trust in them, you mention that she feels that they have 'closed her mind to other treatments.'
It could help to find an oncologist who can explain their decisions so your mum can understand the bigger picture.
Hi There,I can understand your concern about the supplements. I would be concerned about Liver and Kidney function as chemo is already quite heavy on these. These levels are checked along with others to decide if its safe to go ahead with next chemo.
I am inoperable and I am very conscious about toxicity as raised liver enzymes delayed my chemo at times and led to the dose being reduced. Some supplements may be ok but it is important to check before taking anything. They will have access to blood results taken so far and know how the chemo is already affecting your Mums bloods.
I wonder if theres a nurse specialist assigned your Mum who she could broach the subject with 1st. Also I agree with getting a second opinion if your Mum doesn't feel able to talk to her current oncologist about this. I do think checking before taking things is the right way to go and getting a few opinions on it.
I can understand what your mum and you are going through. I have had two open close operations. I know I may be more reliant on drug treatment because I can't have an op. I eat a good balanced diet, don't drink alc and keep other meds to a minimum to keep my levels healthy.
On a brighter note I am here and well after 2 years. Have been stable for 1 and a half years.
Hi Blue, thank you for your feedback, and thanks for pointing out risks to liver and kidney function. While we have gone back and forth, she has agreed to at least tell her oncologists she is taking 'supplements', but won't disclose that she is working with a naturapath. The main thing I am worried about is that she is being directed to use some nicotene patches, along with something called agrimseng and amino glutamine. I am hoping she will disclose these details to her primary care team.
It is great to hear you are still doing well after 2 years. May I ask what the basis behind the decision not to do the debulking surgery was and what effect it has had on your quality of life since? If thats too intrusive, please dont feel the need to respond.
That sounds very hard for you. In the US The Memorial Sloan Kettering website has a guide to supplements, herbs, etc and how they can or can’t be taken during treatment. Her oncologist really needs to know because some of these things do interfere with chemo. Maybe she needs a break for two weeks?
I understand your concern but I would defintley talk to her onc as supplements can be supportive but certain ones depending on the chemo regime can make it less effective its a fine line.
What a difficult situation for you and your mother! I sympathize with you both! I am a 7+ year survivor of stage 4 ovarian cancer, and am also a nurse in the US. I know firsthand how terrible she must be feeling after all of the chemo and now healing from surgery as well. She is demonstrating a strong will to survive by continuing to seek treatment though...and that's a definite positive! Unfortunately, she is looking at means that may just cause her more problems. People often think that supplements are natural, and therefore will not harm them. They do have side effects, and can cause damage to the liver, kidneys, and other organs and systems. It seems that giving her body time to heal itself may be the best option, as it is after any surgery.I definitely agree that the oncologist in charge of her care must be primary in making decisions about her treatment, to prevent harmful medication interactions, etc. As someone else mentioned, a second opinion from another oncologist might be a good action at this point if she has lost confidence in her care. Improving nutrition and activity level might also help her to feel better. It's important to address your mother's mental well-being as well. She seems to be anxious, and may be depressed with all that she is experiencing. She might benefit from seeing a therapist to talk with. I hope that the two of you can find some steps to take, giving her the ability to have control over some aspects of her life at this difficult time. Take care!
Hi there, Sorry to hear about your mum. I have also faced this dilemma when I was on my chemo and had found it extremely upsetting emotionally and physically. But I had taken the advice from homeopaths and other intervention medium like Reiki to have some peace to combat the side effects. The homeopathy works to calm down and pain relief along with detoxification. The naturopathic stuff like juicing and smoothie also helps a great deal if your body is up to it. I had lots of weight loss so was very difficult with anything let alone chemo. But everything will pass on. Please message if you like any info as I did lots of stuff and my oncologist and surgeon were okay with it generally.
Hi, i understand your concern and fully agree with you about the potential danger that supplements can cause with chemo. Chemo process is definitely extremely difficult. i had 6 cycle of carbo + paclitaxel 3,5 years ago after the debulking surgery - i was stage 3 OC. I started taking an antidepressant (Cipralex) when i was first diagnosed and still taking 10 mg every day. It really helped me to deal with the uncertainty and difficulties of the treatment. Last year cancer came back again on my intestines; another surgery and afterwards chemotherapy for almost 10 months. Now i am on a new targeted therapy. And Cipralex is still helping me. I don’t know the common practice in your country but mental health is one of the most important components of cancer therapy and mental therapy and treatment should start at the beginning of this illness because it’s is too much to handle by yourself.
I have such sympathy for your mother …… I was only 49 when going through chemo and it was the toughest experience of my life! I too felt it was so toxic it would shut down another part of my body and I would die of a complication rather than the cancer itself - I was twice hospitalised in four rounds of chemo. I was continually worried re my heart and kidneys. I also did a lot of searching for natural ways to heal but the oncologists are not interested in any other approaches than chemo/surgery - so your mum will be completely shut down on that front - so I’m not surprised she’s not telling them!! The problem is chemo is so toxic she can’t be having other injections and stimulants at the same time ….. due to unforeseen potential reactions. They told me not to do anything during chemo (I was told not even to dye my hair, no iron tablets (which I normally took), limit sun exposure, don’t eat grapefruit, don’t have eyebrows done, etc - I think just a basic daily vitamin was all they said yes too (and I had to ask about that!) I think she needs your emotional support right now more than ever …as chemo is horrendous. I can’t really answer your question on what to do next but only share my own experience here and hope some of it is helpful. Xx
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