Lomustine - any positive stories?!??

My husband is to start it too ,  don’t know what to expect , consultant says it only works in 10% of patients - sorry not much help , wishing you best of luck x

HI

if you are panicking I'd strongly encourage you to talk to your CNS and voice all your fears and concerns about the proposed treatment. I'd offer the same guidance no matter what drug was being proposed.

Lomustine was never one my late husband was offered. I did look up some generic information from the webisite for you

Lomustine | Macmillan Cancer Support

It might also be a good idea to give the helpline a call. 

It’s always good to talk so please remember that you can  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.

love n hugs

Wee Me xx

Thankyou for this 

I had Lomustine as a part of PCV treatment (along with Procarbazine and Vincristine). It was a rough treatment, but my body allowed me to complete 5 of the 6 cycles. 

I lost 11st during this treatment because I could not eat much. I existed on only watermelon and marmite toast through much of it. Most of the weight that I lost was put on post-diagnosis while I was taking dexamethasone(steroid). I had bloodwork fortnightly to watch my platelets and red blood cell counts.

But, it did the trick, and I've had no evidence of disease for the past 3 years! I now have preventative MRI scans every 6 months to ensure that we catch any new growth quickly.

Best of luck!

Thanks so much for the response! So pleased it has worked for you x

Dexamethasone is the worst. I ended up with Cushing’s syndrome so I hope I never have to take that again - it made me feel worse than even chemo!!

Hi, I’ve just finished 4 rounds of this chemo (PCV).

Felt a bit ill at times during the first round but quickly learnt if I took the anti-sickness meds 30 mins before each procarbazine capsule I felt ok.

Also, I found eating something like a couple of sandwiches or a bowl of cereal an hour before taking taking the procarbazine helped.

I was supposed to do 6 rounds of this chemo but after round two I developed a rash, turned out I was allergic to the chemo, oncologist was against changing the chemo so I just had to keep going but the rash got progressively worse, kept coming back after every procarbazine capsule during round four so the oncologist agreed that I should stop, told me it’s rare people complete all 6 rounds anyway.

Next MRI scan next week on the 30th, last two scans have been stable.

Good luck with your treatment.

My 43 year old athletic healthy son was doing great after surgery chemo radiation for glioblastoma. Removed clear margins right occipital, thalamus secondary possible inoperable proved to be lesion. Now left ventricle small caught on repeat MRI. He is to start Erdafitinib this week. Designed to treat metastatic bladder CA with EGFR3 gene. I am afraid he should be on drug you used ?. He has mylated MGMT? Ran 4 miles the other day has two year old and new baby due in July. Time is of the essence.

I don't have any experience with glioblastoma. Im sorry that your son is going through this. I was 44 when diagnosed with AO3. For me, the PCV combined treatment worked best.

P - Procarbazine

C - CCNU (Lomustine)

V - Vincristine

After my 70% resection, I had 5 weeks of RT and TMZ. Then, 6 months of a stronger TMZ. I handled these treatments well, but I then had a small recurrence, followed by another craniotomy. 

At that point I started PCV,  and although it was very rough on my body, I think that is what actually worked. I haven't had any evidence of disease since then. I had a final round of TMZ because my doctor said that I handled it so well that it wouldn't hurt to be extra sure that it was gone.

Now, I'm 6+ years from diagnosis and have had clear scans every 6 months. 

I was MGMT+, IDH1+, and had the chromosome co-deletions. 

So one one hand, I'd say that PCV treatment was tough and I wouldn't want to go through that again. On the other hand, I believe it was very effective. Many people have to drop the Vincristine to get through it.

I wish your son every bit of luck that I can. I also found that positivity and optimism helped to get me through.

Can I ask what stage and location did you have the tumour and if that remains 30% shrank. Hope your feeling good

Mine was stage 3. It was in my right frontal lobe. After a small recurrence and another craniotomy, I had more TMZ and the tumor is now gone. I have been stable with no tumor for 3 years.