August 12 & 13 2009, back for more chemotherapy at Birmingham for 24hours, then the long journey back hope to Stoke on Trent with the after effects and feeling low. The next few days you go through a mixture of low days and high days, feeling very sick and tired. I can’t sleep at night so getting up at 3-4 am in the morning and feeling like a zombie after a few nights. Mood swings all over the place. My throat is better this time controlled by mouthwash. But my leg and foot are swelled again, so looks like this is going to be a regular occurrence through the treatments. Gaining weight due to the steroids tablets, so need to diet and reduce steroids if I can cope. On a positive note they took an x-ray and the results were good. The lungs were slightly clearer so seams that the treatment is doing good and going in the right direction, so we will continue with more courses of treatment.
Talked to the consultant regarding the use of Liquid Zeolite (anti-oxidant) and the Yondelis Chemotherapy combined and he looked into it. He came back and confirmed to use both together, so going ahead with it as before. I also take the 1000g vitamin C tablets which also helps my immune system. I think it all helps, together with a good diet and avoiding alcohol and fatty foods.
But hey this is what you have to go through with every treatment and it's doing good then lets' go for it!
That's all for now.
Carl
FormerMember
Hi Carl
I dont have the same cancer as you i had a leiomyosarcoma (womb) just saw your blog and had to answer it was so nice to here someone from stoke-on-trent like you i had to travel to christies hospital a bit out of my comfort zone dont no if you feel the same could you not have your treatment at north staffs hospital?.
Keep fighting and i hope your treatment goes well, forget your weight just enjoy each day as it comes.
check with the consultant before you reduce or stop the steroids, I am on R-Chop and was initially told steroids were to help feel good and eat after treatment so I thought ok can reduce and stop them, only to find they were part of the treatment and the above was a bonus. So becareful and good luck with the rest of the treatment, i go about 3 days with 5min naps during the day then hit the wall around the 6th day.
The cancer I have is very rare on 2000 cases per year in the UK. Birmingham are a specialist unit and North Staffs don't do the Yondelis treatment as its new and cost a fortune, so the primary care trust in North Staffs won't foot the bill! I trust Birmingham as they have done all my treatments and operations to date. My local GP and specialist originally misdiagnosed my condition in my leg for 5 months, delaying the removal of the tumour to such a state that I had to have my left left amputated above the knee! Who knows it could have been all different and I may have kept my leg and no re-occurrence in my lungs? But I will keep on fighting and when this treatment ends after 12 cycles I will try and find other treatments if I can to give more time with loved ones and live life to the full before its too late.
Carl Jones, how is your condition now? I had a misdiagnose of my Sarcoma Cancer too. Right now I am undergoing Yondelis treatment and I am thinking if I should take our antioxidant supplements to counter the "weak" cancer cells (as it is being attack by the chemotherapy).
