Lightening progression of symptoms

Hi dollcat 

I am sorry to hear of your situation with your husband. I was diagnosed with GBM4 on the 4th May this year. I have started my radiotherapy and chemotherapy, and am now 2 weeks into it. I have a weekly blood test, and on Friday after giving blood in the morning, my doctor rang me to say , stop taking the chemotherapy tablets, as my blood. Was showing a very low white blood cell count ( neutropenia).

I have to have another blood test on Monday, to check on the bloods again. Not sure what will happen when they get the results.

I am also on blood thinning injections, due to clots on my lungs, these my wife gives me at night.

I have not had any side effects yet, except for the above issue, but I do have a muscle problem, not as strong as I used to be. My wife used to give me the jar to open, now I give it to her.

you don't say how old your husband is.

I can relate to your husbands problems, but as said in other posts, everybody is affected differently, so you just have to be there for him.

I hope this post help in some way.

Glenn

Thanks for your reply - looks like it's just a case of wait and see. He's 63. Good luck with your bloods.

Wow, that's a bit close to home, I was 64 last month. Has he had his mask measured yet. He will need that for the radiotherapy treatment.

Yes - mask measured. The dominant lesion is at the rear of the left front lobe. He has another biggish one as well as a cluster/satellite of smaller ones. 

Sounds very similar to me, I have a second tumour on my brain.  I have to wait till my six weeks of treatment is over before they do another MRI. All a bit slow time, but I guess they know what they are doing. 

Yeah they won't do an MRI during radiotherapy as it causes alot of swelling, so you get an image that will be just a mass blur, in fact I had to wait 6 weeks post radiotherapy to allow for any swelling to go down before they would do one. (Well that's what the specialist told me at least). 

DollyCat did your husband have surgery or have they gone straight to radiotherapy?

It sounds like the main tumour is in a similar position to mine, mines in the left side frontal lobe, in the rear, in the motor cortex region which effects control over my right side. My right arm and leg improved during radiotherapy, though how much of that was as I was recovering from the surgery and walking to and from the train station most days vs the benefit of the radiotherapy would be hard to say. To the point I had a blue badge assessment at the end of my radiotherapy and was deemed to be to "well" and my application was denied! 

I've also found that each time my steroids have been reduced down low I've ended up with a skin reaction which makes my skin super sensitive and itchy so that might be something to keep an eye on if his steroid doses are being changed frequently. (Though I had immunotherapy treatment which started off my skin issues!)

Thanks Xpio. Tumour is inoperable as it’s in an awkward position. Good tip re the steroids. I’ll speak to CNP tomorrow. He’s also itchy which I’d assumed was the opioids. Anti histamines not really helping. He got a Blue Badge straight away and his wheelchair was delivered Friday. Taking each day as it comes. Keep well. 

I was given anti histamines as well, might as well have been smarties as they didn't help at all! Took them for a good couple of weeks and then gave up on them, decided was already on enough tablets as it was (was up to nearly 20 tablets a day during a chemo cycle at one point!) 

Wow sounds so similar to my husband. He is 43 and for taken to hospital from work with suspected stroke. 8 weeks on and he's had debulking op, and we have just started 6 weeks of chemo and radio.

His symptoms are not as severe as your husband. He had weakness on his right side, mainly hand and fingers which makes shaving, eating etc tricky. He has difficulty with his words - much worse if tired. He can say some words, short sentences but does get muddled.

We are taking anti sickness 30mins before the chemo tabs at around 11am so he can have chemo 1130 then lunch at 12pm.  The tablets are toxic and can't be touched so if he can't do them himself make sure you get gloves.