immunotherapies and DCVax-L

[swimswimswim]

Hi all - my husband was given confirmed biopsy results (after a debulking operation) last week of grade 4 GBM. His treatment plan is 6 weeks of radiotherapy with chemotherapy, then 4 weeks rest, then 6 months of chemo. I'm interested in people's experiences of immunotherapies, particularly DCVax-L - has anyone done this? or investigated? i'm finding it hard to find much info online, so any experience or research you have to share would be very much appreciated! thanks in advance.

[GT33]

Hi, same kind of treatment I have been through. I don't work anymore and take it easy as my brain gets a bit muddled. I have done the 6 weeks and 6 months, took me a while to settle, but now I accept who I am and what I can do okay with. I have changed my diet ( no steak except once a month). We see how it goes.

[Tansi75]

Hi,

I was diagnosed with a grade 4 GBM in May 2010, so it is possible for your husband to live beyond his prognosis, if you both remain positive and take each day and step, one at a time.

Can I suggest you go to the Brain Tumour Charity website and download their BRIAN APP, where you find various posts on the discussion board, based on my experiences, which includes the alternative anti-cancer treatments I have been using.

Whilst I have no knowledge regarding DCVax-L, I do use Higher Natures ImmunePlus tablets do boost my immune system.

Diet is also a key element in the fight against this disease, please see my post about this on the BRIAN APP. One important step your husband can take is to reduce all unnecessary sugar intake, which feeds cancer cells and keep to a healthy diet.

If you have any questions about this post, please leave a response and I will reply.

Regarding chemo, I recommend he drinks a pint of water when he takes the tablets. This will enable his body to digest the medication quicker into his system, which is what I did and suffered no side effects.

I wish you both the very best for a positive future on the journey you have both now commenced. Most of all be positive and see this as an opportunity to take both your lives in a new direction; laugh as much as possible and always keep one eye open towards the future. Live your lives and believe you can get through this situation with a positive future ahead of you.

[NittanyLionVsGBM]

Hi,

I was diagnosed with Glioblastoma/Grade 4 in July 2022. Have gone same path you described. Now starting 7th cycle of TMZ maintenance treatment.

I am not sure of the “L”, but will advise that I contacted DCVax/Northwest Bio using the contact on their website. They responded almost immediately. Some questions asked and info provided.

For me, this process is not currently viable based on tumor sample size and more importantly how sample (taken during resection) was stored.

Must be stored a certain way. Best is you contact them (DCVax/Northwest Bio) Possible your hospital handled storage in a compatible way.

If/when I have a recurrence will plan on sample size and storage method being compliant with DCVax requirements.

Hopefully no recurrence of course.

I believe when insurance covers it in USA it may drive this to become a more common practice. For now, even if sample had been stored in accordance, would have had to travel to Europe multiple times and pay out of pocket.

Future for this approach seems bright.

My note is my personal experience. Not medical guidance. Contact the company. They are responsive. Discuss with your Oncologist.

Wishing you success in a difficult journey. Hang in there.

[Tangothecat]

Hi there my husband has the GB grade 4 unmethylated small cell diagnosed 14.2.2022. He had the craniotomy followed by 30 days radio and chemo but he did not proceed with the 6 months chemo as he was too ill from treatment. Watch out for pulmonary embolism as our oncology nurse did not spot the symptoms which then made him very ill coupled with depression and then getting COVID. He has not had any further NHS treatment since 25.5.2022. We have used a London clinic called care oncology who gave prescribed other drugs which may or may not have helped (Metformin, menbendazole and atorvastatin) but my husband is still here a year on and we are on a cruise ATM.

[kerrycap1 in reply to Tangothecat]

Enjoy every moment! So lovely to hear you can enjoy a cruise together! My husband was diagnosed with grade 4 glioblastoma in May 2021 and passed away in November. Wishing you and your family all the best

[FredandCassie]

Moreover, NICE current guidance [NG99] reads as below:

1.2.27 If asked, advise people with an initial diagnosis of grade IV glioma their relatives and carers, as appropriate) that the available evidence does not support the use of:

• cannabis oil

• immunotherapy

• ketogenic diets

• metformin

• statins

• valganciclovir

This is all we get from our oncologist. They won't entertain anything which isn't surgery, radio, chemo. Including supplements! Also GMB4.

Good luck and hope yours is more helpful!

[swimswimswim]

thank you all for your replies, much appreciated! and wishing all of you all the best.