Well we finally have a treatment plan for my husband. He will do 35 tx radiation, concurrent with weekly (Friday) Cisplatin. He starts Thursday of next week. I'm excited that we will finally be fighting, but also nervous for him. He thinks it will be no big deal and I've tried to calmly/matter of fact like tell him it may be tough, but he just doesn't want to deal with that right now. He's on a high from the PET Scan - it showed no metastases at this time!!

Michelle,

Don't want to add to your stress but, have you guys addressed the hearing issues with Cisplatin i.e. high frequency hearing loss that is a well known side effect of Cis.

I think you mentioned that your hubby has no hearing or loss of hearing in one ear. You might want to get a pre-treatment hearing test done to give you a baseline..just in case. Bill made the decision to go ahead with the Cisplatin even with the hearing loss he has...he wanted to take an aggressive approach to his treatment rather than opting for a substitute (Carboplatin.) We have not returned for a followup test, but Bill does not sense any lessening ability to hear.

We were able to schedule that test pretty quickly with his ENT..I would think that if they know the circumstances, that they would accomodate you.

Sorry to add yet another requirement in this maze of decisions and appts you are slogging through...just thought I would mention it.

Deb

Deb - we just continue to have lots in common. We had the baseline test done a couple of weeks ago and have given copies to the RO & MO. Dan opted to stay with the aggressive approach also. The hearing loss he currently has is high-frequency and the ENT has already recommended a hearing aid for both ears, which he doesn't want. We'll just get through this the best we can and deal with the hearing on that side as it happens.

Yep,

Uncanny the similarities. Bill, when faced with treatment options (and after a little time to think about it) told the docs...."give me the biggest, baddest gun you've got.!" Since Cisplatin was the gold standard, that is what he wanted...damned the side effects. He has, over the years, overcome his vision and hearing losses (including passing special FAA tests to become a private pilot) and he wasn't about to let those deficiences stand in the way of his treatments. He and I decided, as you guys have, to deal with the effects as they happen and not fear the unknown.

Good, glad you have those tests behind you...one more thing checked off your list. Glad the PET scan was clear. Dan should be fine after the first chemo...they will give him lots of fluids and anti-nausea meds to fight the side effects. I would have help and support systems in place starting the last full week of March...that will probably be the time when Dan starts feeling pretty lousy and won't be up to a full work load. I hope he proves me wrong, but Bill started downhill around that third week. He wasn't bedridden or anything, he just felt ill and had days that driving to treatments on his own would have been dangerous.

So glad you have a treatment plan in place..now, one day at a time you will get thru this.

Hugs, Deb

Today we went to "chemo school" - the hour long patient education class, it was actually very helpful and informative, but a bit overwhelming too. Thanks goodness for the notebook you all had suggested. I would now be so lost without it.

I can't sleep tonight for worrying about how the first treatment day will go tomorrow. We thought the radiation would actually start today (Thursday), but when he went back there they ended up doing some more alignment stuff with the mask and the RO said he wanted the first treatment to follow chemo. So tomorrow (Friday) we see the MO, then chemo, then radiation then the RO.

Earlier this week Dan had the surgery to put the gold weight in his eyelid and to lift the sagging lower lid to enable his eye to "work again" (closing, tearing, possible cornea damage, etc.) - these were all side effects to the facial nerve trauma from the initial tumor removal surgery. He's recovering nicely just still a little tired (4th surgery in 30 days) and his eye looks like Mike Tyson punched him!!

My only new "fear" is Dan's veins. In the hospital Tuesday for the eye surgery they stuck him 5 times!!!! I didn't know this as they didn't put the IV in until they took him away from me and bless his heart he didn't know to ask for someone else. Then today at the Cacner Center when we went to do our weekly labs the nurse said his veins were deep... Not heard that phrase before. She spent quite some time looking around on his arms and hands until she found something she liked and she was able to get it on one stick, but the blood flow was REALLY slow. I'm interested to see how our chemo nurse does tomorrow. When we were dealing with my mother's breast cancer in the late '90's she had a port, but she had systemic scleroderma, which made her a TOUGH stick before the cancer and the doc knew she would never make it without a port. I didn't think Dan would have any trouble.

Another side note - please say a prayer for me, I have always had back (lower disc) problems and since we had our little boy they've gotten steadily worse. Well one of the bulging discs we've been watching has ruptured. I had a new MRI last week. I know that something had to have changed because a recent round of intense physical therapy, chiro and accupuncture did nothing for the pain. Our next step is an epidural pain injection - I will have that on Wednesday. I just don't want to have to deal with this right now because I want to be strong at operating at full strenght for Dan!!!!

Prayers and hugs to all!

Michelle

One thing I definitely would have done differently is I would have gotten a port. I didn't and there were soooo many times they struggled to find a vein and it's time consuming as well.

Yep, amen on the port...althought hubby is a tough guy, he hates to be stuck and opted to have a port put in during his PEG surgery. He was very happy to have it during treatment...made life easier and freed up his arms and hands during the 5-6 hours of chemo.

Michelle, so sorry your body is giving you problems in the midst of all of this..I will pray that you can get thru this without major intervention...you are right, you don't need this.

Deb

Hi Michelle-
It would be worthwhile to ask about a port or even a PICC line. It makes life so much easier, and since he will be getting stuck weekly it makes sense.

On the hearing loss- I started off with 50% hearing loss in one ear from radiation, then I had severe loss of the hi-frequency hearing from the cisplatin( I had a high dose) But it doesn't affect my ability to hear people talking, watch TV, etc. It is only a problem when there's background noise, like in a crowded restaurant. Oh, and sometimes sounds like birds chirping sounds screechy. Anyway, just to let you know it's not that bad even if it does happen.
Wishing you luck for his first treatment! Hang in there with the eyelid and nerves. It can take a long time but they do heal.
Melissa

Michelle- Ditto on the port recommendations. My husband didn't want one at first but it really makes the treatment go easier. I have lower back trouble also. My herniated discs never ruptured so I can only partially feel your pain. Hang in there!