Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.

Taste-I have almost all my taste back. I would rate it 9 out of 10.

Hair on the back of my head-Beginning to grow back.

Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.

High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.

Mental capacity-Fully recovered or I'm worse off than I think. LOL

Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.

Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.

Turkey chin-Gobble, gobble, still have it.

Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.

All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.

All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.

Hi David,

The fact that the dry mouth has started to reverse is excellent news. I had probelms for close to a year after COuldn't talk very long, etc. It should slowly get better if it has begun. I still have a few problems at night, but have learned to deal with it. For the meantime, carry bottles of water and use often. There are some OTC solutions, but few work very well. I found the hardest part was sleeping. It was close to a year or longer before I had my mental faculties back, if you can call them that. It has only been in the past four months I have been able to work a full day without being mentally spent and we both have tax season coming up.

Steve

Hi David --

Ask your doctors about Evoxac -- it was prescribed to my husband Barry by his dental onc at Hopkins (an expert on salivary function and radiation effects) -- he started taking it after treatment. In some cases they start it during treatment for patients who are showing bad dry mouth early on. My husband's xerostomia was never terrible, due to his radiation plan (tomoTherapy IMRT, very precise, allowed missing much of salivary glands) as well as his taking amifostine (ugh!) all the way through. However the Evoxac did help him get over the worst part of it, he took it 3x a day for some months and is now down to once a day (at night) or 2x if we are in a dry climate (like Australia last August).

He never has to sip water and almost never uses any of the artifical salivas because he gets a more benefit from simply chewing a dental gum, XyliMax, (available from many dentists) which stimulates natural salivary production and has the added benefit of reducing sugars in the mouth and thus the risk of dental caries. I am sure you have been told that dental issues are one of the worse outcomes of dry mouth.

Gail

p.s. Barry does feel less "sharp" now than before treatment, his MO says a number of her patients report that even though the usual chemo drugs (cis- or carboplatin) do not cross the blood/brain barrier and should not be causing "chemo brain." She says the cause is unknown but usually resolves. (Barry hopes so, in meantime is doing "Memory Prescription" book exercises and Sudoku. How many others here have fet a bit "fuzzy" some months or even a year from end of treatment?

David,
In my case the turkey neck went away, but the dry mouth never did. However, all things considered, it is not that bad a side effect. Even though I have the dry mouth,I snow ski and hike (with a camel pak), work out at the gym (with a cup of ice water) and play golf all the time(with a bottle of water). Not bad at all. By the way, I am back to my normal weight.

I already had high frequency hearing loss and it probably got worse from the treatments. I probably need a hearing aid but, at this point, vanity keeps me from getting one. I just do a lot of "pardon me's".

At your point I had very little taste and could not swallow well for many months. It sounds like you are doing very well.

Take care,
Danny G.

David, just as I was starting to think "plastic surgeon" the turkey neck vanished. As far as the dry mouth, I started out that way post Tx, and several months later was just about turning cartwheels when I found myself licking an envelope to seal it. Progress in that area was slow and I think it was close to a year when I realized I was out and about without my water bottle, and that I didn't need it. Hang in there!

I think you are doing remarkably well and wish you rapid continuing improvement.

Gail, in answer to the "mentally fuzzy" question, I am a year and 6 months out of treatment and still notice it sometimes (like Barry, I also started doing daily Sudoku last Spring in hopes it would sharpen me up a little). But in my case, I'm not sure if it's from the chemo or from creeping hypothyroid that got severe all of a sudden in October of this year and, even though I am now taking meds, is still not stabilized completely (I am am going back for monthly blood tests as they mess with the dosage). My doc said mental fuzziness can be a symptom of a hypothyroid condition that shows up even when the other symptoms aren't strong. I know Barry must be getting checked for this, though.

Nelie

Gail,

Thanks for the suggestions. I will talk to my dentist Tues. I'll let you know.

David,
Thanks for posting this topic. Mike is close behind you and wondered how you were doing. Dry mouth is his worst side effect as well. You are 4 weeks ahead of him.
Any news from the dental visit?

MikeG,

He has been closed for the Holidays and will reopen Monday so I'll try to talk to him first part of next week.

Nelie --

Barry had mild low thyroid before treatment and was already taking a very low dose of Levoxyl but they also have been checking it regularly as part of follow-up, TSH and also T4 and so far no problems. They also checked his vitamin B and D levels as these can be associated with mental fuzziness. And they gave him a brain MRI to boot. These were all OK. So they are a bit puzzled but apparently, as the MO says, it is not uncommon and often resolves with time. The MO referred to the recent article on women who had had breast cancer treatment and actually showed post-treatment brain shrinkage. Fortunately they returned to normal within 2-3 years.

But weird -- anyway he's been using the Memory Prescription book and after its 14-day "brain boot camp," performed better on the tests so this did help. And is continuing the Sudoku. I'll bet the brain needs a recharge after the ordeal of treatment, just like folks need swallowing exercises, or other physical therapy.

Gail