Advice on alternative therapies

Hello. 
so sorry to hear about your sister. We all deal with this in our own way. When I was diagnosed in July , I had a long chat with the neurosurgeon about alternatives. His advice was waste of time  possibly money, very often scams. 
do you know why she has rejected the radio/chemo route? I have just finished the initial 6 weeks and its been fine. All the warnings of side effects were unwarranted. 
if your sister just wants to feel generally better then good diet etc will help. I now make every calorie a good one! However I do not think any holistic treatments will offer a cure 

best wishes to you both

Hi Tashie, thank you for responding and I'm so sorry to hear you are having to go through this. Fantastic that they were able to remove it all during the operation and great to hear the radiotherapy was tolerable. Good luck with the next stage.

I think my sister fears are based around potential negative side effects of both treatments and being tied to the hospital and losing her freedom. She has said she wants to try things like hyperbaric oxygen therapy and Chinese medicine and possibly immunotherapy so that her quality of life is better for as long as she has it... She is heading off today for an appt with a Tibetan medicine Dr! 

She currently feels really well and looks it too hence trying to prolong that feeling I guess...

Hi Caringsis

a warm welcome to the group. Sorry to hear about your sister's diagnosis. Hard as it is you need to respect your sister's decision not to pursue a conventional treatment route. 

My late husband G declined all further treatment after the initial 6 weeks of oral chemo/radiotherapy and actually said several times over the next couple of years that he regretted doing them. He didn't pursue a holistic route either. He just did what he felt like doing which did eventually make life challenging for me and our two adult children. He was a fitness freak (marathon runner) and ran up until 2 months before he passed. 

Everyone's route through this is unique. I'd suggest your sister speaks to her CNS or Dr to ask their advice and thoughts on alternative therapies as they are the ones best placed to advise.

There's some treatment guidance on the website. Here's the link Cancer treatment - chemotherapy, radiotherapy, surgery | Macmillan Cancer Support It covers some different options but not all.

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen as you've already seen, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We've got you.

It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

for now though I'm sending you both a huge virtual hug and lots of positive energy.

love n hugs

Wee Me xx

Hi Caringsis,

I'm not usually in this forum, I'm a visitor from the Lung Cancer forum but I've started browsing here after a friend got a glioblastoma diagnosis. I did have a brain tumour though (2ndary, left parietal lobe).

You asked for advice. Your sister had brain surgery 6 weeks ago: that's not long enough, she will not be thinking clearly yet. She'll think she is, but the thing she is using to assess herself (her brain) is the very thing she should not be trusting. As a bit of a control freak myself I found it hard to delegate important thinking to others, and I really didn't like doing it, but it had to be done.

As she has already had surgery a sample of her tumour has already been assessed for immunotherapy potential. As that had not been offered in the treatment plan it has already been ruled ineffective.

Radiotherapy and chemotherapy are both tried and tested treatments. If that's what her team advocate then their opinion should be respected.

If your sister wants to go full-on life-or-death even-try-alternative (and why not, I would) then she might consider throwing a ketogenic diet on top of the treatment on offer. It would be good if her consultant was onboard with this.

kind regards,
Steve

Hello,

My husband is 17mnths post diagnosis with all the standard treatment(debulk,radio,chemo)he still has chemo and has been on chemo for nearly a year,he hasn't had any side effects not even hair loss, he work's full time and exercises 3times a week.

He initially didn't want want the standard treatment but was told he would have 3mnths without it.

As someone who is a qualified in biochemistry I would say that no holistic approach would be able to fend off this for very long.

My husband, alongside standard treatment is on the Keto diet and also takes a few other things that he thinks helps -these may or may not have any effect.

My husbands initial steroid treatment made him quite stubborn with tunnel vision but once he was off steroids he was a bit better at taking advice.

Hope that helps.

Take care 

Wee Me

Thank you so much for your quick response and I'm so sorry to hear you have lost your husband.. it is very interesting to hear how different people choose to deal with their diagnosis and based on the past few weeks I can imagine how challenging it was for you.

I appreciate your time in providing me with information to follow up on and will let you know how we get on!

Thank you too for your caring and kind words. They meant a lot.

Hello,

Thank you so much for taking the time to respond and tell me about your husband. How fantastic to hear he is still working and exercising - long may that continue!

Very helpful advice and I will attempt at some point to pass it on to my sister! She isn't great at taking advice normally so we really are treading on eggshells. It was much worse when she was on steroids but she is off them now and slightly easier to approach.

She has loosely begun following a keto diet and is taking various vitamins and minerals too...

Steve 

Thank you so much for taking the time to respond. I'm sorry to hear about your friend and hope that you are ok too.

Good point re her not making decisions clearly despite thinking she is. She has made such a fantastic recovery from her surgery and looks so well too that I think we might all be slightly  overlooking the fact that it is only 6ish weeks that have gone by since the operation.

She went to see a Tibetan medicine man yesterday and is off to try some time in a hyperbaric oxygen tank in a few weeks but I really do feel she needs a proper plan of action with this being such a fast growing cancer..

Thank you again for your advice. 

I can certainly relate to the being tied to the hospital part. Every week day for 6 weeks I made a 3 hour round trip, and once a week a blood test at a different place which wiped out every Friday. Difficult to keep up work and hobbies, but really what is 6 weeks to buy months or maybe years of life. 
I have had no side effects. 
The chemo is in tablet form and my understanding is that all I need ongoing is a monthly blood test and the meds will be couriered . So the ties to the hospital will be really very loose. 
Now, all this said, I did decide my path by myself. I would have been furious if my husband had tried to intervene! Luckily he has more sense… it may be a hard discussion. 
may be worth remembering one can always step off the chemoradio path but if the tumour regrows fast may not get a second chance. 
warm wishes to you both

Tashie,

Thanks for your message and I'm so pleased that you had no side effects from the radiotherapy. What a long round trip to have to do daily, but as you say,  if it buys more time then it's worth it! 

I hope I will be able to share some of what I am learning so far from you all with my sister . We support any route she chooses to take but are concerned that she hasn't found that path yet and time is ticking on...

Good luck with the pill...far nicer to have that sent to you than have to make further trips to the the hospital!