IDH Wildtype Glioblastoma

Hi Arthi2dO647

a warm welcome to the online community. So sorry to hear about your husband's diagnosis. Life's too cruel for words at times.

I can empathise with all the emotions you are going through as I have been in your position. I supported my husband through he 3 years of his GBM journey.  He was able to have surgery to debulk the initial tumour which was followed by 6 weeks of oral chemo/radiotherapy in combination. He coped really well with the treatment regime. The only real side effect was fatigue which kicked in around week 4 and lasted for about a month after the treatment finished. He too was really fit. He was 50 at the time of his diagnosis and a marathon runner.

Timescales are something I have a love/hate relationship with to be honest. Initially we were told without treatment and surgery G would have 3 months but with surgery and treatment it would be 18-24 months. Post surgery that was reduced to 12-15 months. G lived for 3 years 2 months and a day from the date of his initial diagnosis. Read into that what you will but I drew the conclusion that a GBM journey lasts as long as it lasts.

All the emotions you are feeling right now are completely normal so please don't be too hard on yourself. Numb is normal at this point. I cried oceans of tears at the start of G's journey. It is a huge amount to process so please be gentle with yourself and let those emotions out. It's the strongest among us who show our emotions. 

I've written a couple of community blogs for MacMillan that might help you at this point. Here's the links-

Caring for a partner with a brain tumour – a Community member’s story - Macmillan Online Community

 “I’m fine”: how do you really cope as a carer? - Macmillan Online Community

This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, 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.

If there is anything I can support with at this point, please just ask. You can message me direct via the forum if you prefer a less public chat.

For now though I'm sending you a huge virtual hug and lots of strength. You are coping with this so much better than you are giving yourself credit for. (You'll just need to trust me on that)

love n hugs

Wee Me xx

Hi Wee mee

Thank you for responding. I read many of your responses and it is helping me. I am feeling a bit lost as I am not seeing any cases of inoperae tumor in the left temporal lobe which is what my husband has been diagnosed with. I was hoping to hear from people who may have had similar and what to look out for. But I guess there are similarities and difference no matter where the tumour is. We have now been given an appointment with the oncologist on Friday. I am worried about the daily commute to London for six weeks - particularly of train cancellations or delays. I am trying to figure out a temporary accommodatio n in London but the husband wants to be at home. Dealing with tiny battles- one day at a time

HI

the commute for the 6 weeks can be exhausting. We had a  60mile round trip every day which was bad enough.

Check out Maggie's - Maggie's | Everyone's home of cancer care In some situations they can support with accommodation for patients going through treatment.  They have a few centres in London.

Taking it all one day at a time is the always the best way I have found.

love n hugs

Wee Me xx

So sorry to read your post, it is such a terrible shock.  I am in the same situation as you, in that they have said my husband's tumour is inoperable; he just had a biopsy and then got passed straight to oncology.

This is exactly in the same position as my husband's tumour and he was told it is inoperable and has had 15 days of radiotherapy and temozolomide, which is half the usual treatment.  They said this has been found to be just as effective (?) and as he had to do 130 mile round trip every day for radiotherapy, they thought it would be too tiring.  

I feel he has been written off and just don't know what to do.  I have spent days looking on the internet for something to give hope and would really like to be able to try Sativex, but have been told no.

Hi Bev

I am very sorry to hear of your husband’s diagnosis. My other half has been prescribed 6.5 weeks of radiotherapy and chemotherapy together, daily visit to London. I have also explored alternate options and have zoned in on Dendritic Cell Therapy where the vaccine is prepared using the individual’s biopsy and blood sample so the specific antigens can be identified and the vaccine customised to the individual. This therapy is only approved for luekemia in UK so I am having to look abroad. The treatment is available in all hospitals in India and am exploring taking him there after the completion of Chemotherapy. I believe this is the treatment protocol where in Immunotherapy is done after Radio and Chemo. I spoke to the Consultant at UCL and he mentioned he would enquire if there are any local trials he could be considered. 

It is a very challenging time, and somehow no clinical trial seems open. I enquired in UCL about Ippumiloab which is also a tablet Immunotherapy led by Dr.Paul Mullohland, a consultant at UCL. We got told applying to participate in it will delay radiotherapy so we had to drop it. 

It is a very challenging and frustrating time.Please do enquire about Dendritic Cell therapy, we had a consultation with the expert in India and they are very positive of its benefits. It makes me so angry why it is not approved here when it is not even overtly expensive.