Update on GBM in Spain

Hi everyone,

I thought it was about time I gave an update as it has been a couple of months since I last posted. I'm not sure it will be of any use to you all back in the UK as everything about my partner's medical treatment is so far removed from anything I've read on here that you might find it difficult to draw parallels. In any case, GBM is GBM the world over and I have found it so helpful to read your experiences that I want to make sure I add my own.

To briefly recap, she is 37 years old and was diagnosed back in June last year, so we are now in the 12th month post-diagnosis. They were not able to de-bulk as the tumour was located next to a lesion from a previous injury. As she was in a very dangerous state, they signed her onto a clinical trial and inserted high-dosage brachytherapy seeds around the tumour. This gave her a very painful summer but was successful at reducing the tumour to almost imperceptible levels by October. Sadly, that didn't last long and by December there had been considerable re-growth. They started blasting this with proton therapy and again had some success at decreasing the spread. They eased off through January and then added chemo and radiotherapy. By the end of March she started to experience a burning, itching sensation over her whole body and the medical team became concerned that this was an alergic reaction to the treatment.

A new medic came in to take the lead - this was nothing unusual, she has been passed from pillar to post every couple of months. The new oncologist turns out to be a visiting researcher from a University Hospital. He rightly paused her chemo and ran tests, scans, bloods etc. By early April he concluded that her body was rejecting the chemo and advised that this was now doing more harm than good as the tumour was continuing to grow. Since he was also concerned at the massive levels of radiation she had gone through with the brachytherapy, proton therapy and radiotherapy he also concluded that this too had to stop for at least a year. So he effectively told her that she had reached the end of the line and there was no further treatment available. This is where is gets weird and I'm in two minds whether to even post the next bit, but in for a penny...

As the conversation progressed (I wasn't there, it was by phone), he asked her whether by any chance she had conserved any of the umbilical cords from previous pregnancies - she has children from a previous relationship. When she confirmed that she hadn't, he said that was a pity as there are promising results coming out of stem cell research and that the only other option available to her, other than sitting back and waiting for the tumour to run it's course, would be to get pregnant. The idea seems to be that if she were able to get pregnant and survive long enough to carry it to term, they would be able to harvest the stem cells from the placenta and umbilical cord and use this to cultivate a re-coding of her dna to directly attack the cancer cells and potentially create immunity to the disease. I was absolutely floored by this suggestion and as you can imagine, I googled the heck out of it and came up with little more than a few lab tests on mice which had extended their lives by a couple of months.

Her initial reaction was to reject this immediately. By her own admission, she is not the motherly sort and has more than enough children already. But understandably as time has gone on and the stark reality has started to dawn on her that no other options are available, the idea has started to take hold. 

it all sounds to me like pure science fiction, apart from being incredibly unethical and with no demonstrable chance of success. I have also understood that the only scientific probability is that the pregnancy will energise the growth of the tumour. I think the whole suggestion is surreal and have made this view clear to her from the start. This didn't help matters at all.

She is aware that the chances of success are slim, to say the least, but it's all she's got. In her eyes, I am now the potential cure for her cancer and my reluctance to go down this route will lead to her certain death instead of a small chance of life. This has begun to tear us apart right at the moment when she needed to be coming to terms with her situation. It's as though she's been led to believe that I hold the power of life or death over her. I am close to 50, with 3 grown kids of my own and have only known her for less than 2 years. The last thing in the world I wanted is to have a baby, even in the best of circumstances, but I believe I would do this for her if I felt for a moment that it had a genuine chance of success. As it stands, I can only feel that it will add to her problems over the coming months and that even if its clinically successful it might only extend her life by a short time - leaving me as the single parent of a new-born.
 
The doctor who proposed this has now gone back to his own hospital and appears not be be available to discuss this with me. I can't be sure if this was a throwaway comment that she has snowballed into her one realistic chance to overcome this disease, or if it was a genuine proposal but either way I am floored at how unethical this is to even suggest.

She is still in relatively good health which makes it hard for her to accept that she can't beat this. She continues to have severe head pain and has lost the hearing in her right ear, she also has a lot of pain in her circulatory system which we assume is recurrent thrombosis. She still stays as active as possible but often finds she isn't capable of doing what she set out to do. She's sleeping, eating and drinking very little and goes through episodes of paranoia and anger but also has good days when she seems absolutely fine. 

The hardest part, as ever, is understanding what the prognosis is. We are all aware of the 12-18 month median survival time post-diagnosis and we are now entering that range, but depending on the day it feels like the end could be just around the corner or still years away. Now this doctor has given her the hope that a complete cure could be within her reach if she can bring a child into the world. My oncologist friend in the UK is horrified and says they should be struck off for this proposal. As if an already tragic situation couldn't have been made any worse.

Anyway, for what it's worth that's where we are. Sending love and strength to everyone whose going through this.