Hi, everyone (several seem to have similar concerns):

I was my husband's caregiver for his induction chemo followed by radiation/chemo. I was on top of EVERYTHING, think I did everyting humanly possible to aid him as he went through treatment, and he was amazing, committed, and really compliant with all he was told he needed to do. He swallowed (albeit just water during a couple of weeks) throughout treatment, kept his weight normal, used recommended lotions for radiation effects, used meds for mouth sores and thrush, rinses, etc. Yet he has had some very, very significant side effects (some sound like Nelie's as he has scar tissue in his throat and things like epiglotis may have shrunk, shifted; he has neuropathy in toes and fingers; several loose teeth despite pre-treatment and during treatment care; had severe anemia which is now resolved; etc.). So I agree that there are tremendous individual differences to treatment based on the individual, the specific treatment, etc.

What I have concluded is that "aftercare" to ensure that the patient is on the track to recover the best level of functioning that he/she can (physically, emotionally,relationally etc.) is sadly lacking. It really falls outside of what the med oncologist and radiation oncologist and even the ENT oncologist do. We have often had to really bring it to the MDs attention that his problems may be more than the norm and that they are affecting his quality of life. It took almost two months to begin infusions of iron compound for the 6 weeks of anemia treatment; we were told that nothing could be done for neuropathy because I think they thought we were asking for a cure rather than coping strategies to help balance, using computer etc (he got a script for physical and occupational therapy and had a phenomenal evaluation today and will now have 50 sessions covered by insurance and they said they can really help him even recover function); it took over two months to get them to realize he really needed a swallowing test (and he has a significant, finger-shaped piece of scar tissue that might cause more harm to remove by creating more scar tissue- no wonder he couldn't swallow that well and choked- we all would with a finger-shaped thing in our throat); the scar tissue obstruction seems to cause acid reflux which could make your mouth sore and certainly affects health of your teeth; and we just recently got referred to a dentist who specializes in radiation effects on teeth and supporting bone.

So- this is my long way of saying everyone is different, most peoples' treatments were individualized to them, and that you really really have to press sometimes to get issues addressed as you are recovering if they affect your quality of life and don't seem to be progressing. Request a swallowing test if you have trouble swallowing and have really been trying; request physical or occupational therapy, request psychological treatment; request labs if your energy is low as you may have anemia or thyroid problems. I have been pretty assertive and I think it will make a huge difference not only in my husband's quality of life but in mine as well because I really, really care about him and us as a couple. He has not been able to be his own advocate as much as he could have in the past because he really got "zapped" by the treatment as the physical therapist told him today. There were many times i thought he wasn't trying hard enough to eat various things as i was comparing it to others on this Board. I really felt humbled to realize how brave he was trying to force things down past a major obstacle.

My thoughts are with all of you with lingering treatment effects- Sophie