Do you mind sharing what side affects you suffered Andy?
We are very close to seeing Chemo without side affects which will be amazing and then offer those with underlying health issues the opportunity to now have Chemo and for patients to receive as much as they need not just the minimum safe amount (MTD) Avacta have promised PK data before year end to hopefully demonstrate this.
Side effects of chemo were tiredness, not sleepy type tired but just no energy tired. I would get up after a good nights sleep and within 30 mins be knackered and felt like going back to bed. A change in bowel movements, very loose stools. Just generally feeling meh. Tinnitus. Was on liquid morphine which has its own side effects. I was on chemotherapy to kill the cancer but also more medication to stop it killing me too! The chemo also caused peripheral neuropathy in my feet which 2 years on i still have. Pain and altered sensation. Its really not nice but much much better than it was to begin with. It may be that i have permanent nerve damage in my feet now.
Transplant was far far worse. Never felt so ill. Was in Addenbrooks for almost a month. I can fully understand why some choose not to go through with it or not to repeat it after a relapse. Thats a decision i will need to make in the future but unless youve been through it you cant really understand why someone would choose a shorter life rather than having to go through it a second time. It totally wipes your immune system and that plays havoc with your body.
Im now on Lenalidamide which is a less nasty form of Thalidomide that i was on during my chemo. It keeps the cancer at bay and increases the time before a relapse. The list of possible side effects is impressive, especially the one right at the bottom that simply states may cause death....
Long term side effects for me are, tiredness still, inability to walk more than a few minutes without needing to rest, peripheral neuropathy in my feet, tinnitus, headaches, loss of strength in my legs, possibly due to compression of my spinal cord due to the damage to my spine, inability to eat even mildly spicy foods without it going through me within minutes. Random cramps. At night i get bad cramp in my calves and more annoyingly i get cramp in my fingers and i cant move them. Theres no pattern to it, it just happens randomly.
Now this all may sound really quite awful but in reality its just my new normal. You just adapt and live with it. And lets be honest, its better than the alternative!