Hi Bill (Chicago Bear Fan)! sorry about our year! Leukemia and the Bears aren't getting it done. tough stuff.
I hate to say it but I found Consolidation much, much tougher than Induction. Most of my sickness started after I was put in remission. I remember, after about a month, finishing the initial Induction therapy, wondering why my Chemotherapy was feeling so easy. I had been made aware by my nurses, many times, that Chemo's effects are cumulative. and they were right. big time. It was at about this point that I started to feel most of my severe illness symptoms. I had terrible digestive problems - heartburn, diarrhea, constipation and cramping, It definitely kept me up at night. I finally got the much talked about mouth sores and had "other-end" problems as well. Chemos kill quick growing cells first so the lining of your digestive tract is affected - from end to end. It felt like food would just sit in my gut and hardly move. The best thing for my digestion problems was protonix (a pharmacist told me this is the equivalent of 2 over the counter Zantac pills). But I often used stool softeners and laxiaives too - and getting the dosage right could be tough. They sometimes helped. but often they did not give me much relief. I had many other side effects that started at this time as well. nausea, lack of appetite, intense headaches (some of these most probably from a head clot reaction to asparaginase at the end of Induction), extreme fatigue, sore throat, congestion, fever, chills. I experienced all this, to varying degrees, for 4 months. I remember vomiting from cab doors and crawling on the clinic floors at check-ups. At times my confidence in the system would waver but those around me were great about keeping me motivated and in the game. I tell you all this because, I believe, it would have helped me to know how sick I would/could be and that it will, in fact, pass. You will feel healthy again after a few months. The chemo takes you almost to a breaking point and leaves you very weak. You smell, taste and feel like chemicals - I remember that so well. They seemed to ooze out of me. I guess they were. It is a period to be endured with not much relief - but sleep and distractions. But it will pass!
As I've said before, ativan and other sleep aides and pain relievers were helpful in getting me through this tough period. I used them often. That said, they have their own side effects like constipation (dehydration), coherency and memory problems. Tapering off pain relievers like fentanyl, hydrocodone, and particularly diladid left me hot/cold, fevery, and very emotional. At one point, for about a week, I thought I was having a mental breakdown. I could not stop crying - even at times when it seemed inappropriate. But then I talked with nurses and other patients and learned that this is common. Overall. I think it was worth these side-effects. and I know there are other opinions on this subject. My experience was that these drugs were a big help to me.
It is tough to know which specific Chemo is causing which side-effects since most have similar side effects and I was taking so many at the same time or in close succession. Methotrexate, Daunorubicin, Vincristine, Prednisone, Aparaginase, Etoposide, Ara-C, and 6-MP, all continuing into consolidation therapy. I think seeing these drugs for a second time, a 2nd cycle, really starts to take it's toll. Somewhere near the beginning of my blog I have posted my drug protocol or schema for my ALL treatments. I think the exact dosages are there. I'll try to post them again here if you want to compare. Prednisone I did not like as I had a lot of anxiety and I could feel my heart racing with hot/cold flashes, insomnia, and high blood pressure - I though at times I was having a heart attack. When I described this at clinic, my nurse said "oh, that's just the prednisone" - like it was to be expected- but unfortunately I was not warned before hand. As I remember, towards the end of my second cycle taking Predisone, (60 mg/day~28 days), I really started to feel "hyper sick." I think the duration of time I had been taking my chemos and the long stretch on predisone combined to make this period difficult. I knew 1 patient that actually liked the effects of prednisone - so I guess everyone really is different.
So, after all that Bill, my best advice is be prepared to suffer through being very sick. It can be very hard with a lot of uncertainty. and the whole nutrapenic/immunocompromised aspect is tough too. Going to the hospital with fevers over at 101 degrees or above. no fun! I think if I could have known how sick I would get, it would have been helpful because the uncertainty factor would have lessened. I remember often wondering if I should feel so sick. I did not look at the experiences of others much and I probably should have. I might have stressed a bit less. I really hope it's not as bad for you and from what I've seen and read, that's entirely possible. Everyone reacts differently. so hang in there and feel free to ask me any other questions you have. Anything I can do to help. It will get easier, Bill!
I'm just back from my EuroAsian work/play trip. 3 tennis tournies. Madrid, Paris. Shanghai. 2 months away from home. I had a really good time. I did catch the flu in Madrid and that took me quite awhile to shake (~3 weeks). and I was congested the entire time I was away so I had become a little concerned about my health. I just had a clinic visit and everything is fine. Priscilla, my NP, says it'll take me longer to get over things like the flu. Maybe even twice as long being slightly immunocompromised. The congestion is another matter. We think all the chemos may have left me with some allergy's. and Shanghai is the most polluted place I have ever seen - I think that had an effect. I suspect the head clot (that's when I noticed the congestion starting), but Priscilla doesn't think this is the case. Anyway, I'm obviously very happy with the clean health report (and my liver is functioning well still!). My chemo levels (6-mp and methotrexate) will stay the same and they don't want to see me again for 3 months! More and more I am becoming less of a patient - and I like it!
I will post some pics of my summer in Chicago/San Fran, my summer tennis jobs, and my trip soon!
Here is my ALL drug schema in case other leukemia patients want to compare.
