Hi Seth and Michael,
Sorry to hear of your trip to the urgent center. That can be an exhausting experience in itself. We too are being told John may not get another dose of cisplatin (he got 2 of scheduled 3). He is feeling pretty miserable, not swallowing, thick mucus, full feelings with even small, slow tube feedings, nauseated and weak. He was hydrated today and given Kytril. He is to start on a duragesic patch, MBX mouth solutions and prevacid for reflux. I'll say that for the medical system - they always have something to offer us for these symptoms. My problem is he's too weak to take all the meds! I hope they come up with a workable plan for Michael. I agree with Gail that cisplatin is practically intolerable.
Peace,
Janet

Seth
Thanks for letting us know how Michael is doing.
This treatment is rough on both patient and caregiver, I am sure you are a wreck worrying about him.
Stay strong guys, the results are worth the torture.
Take Care
Marica

Hi Michael, Seth, Heather,
Have the drs given you a reason why they are continuing with the Cisplatin when you are having so many really bad side effects? Why can't they change the chemo you are getting to another one that is not so toxic? Please read Gail's posts and take then to the drs.

I just looked in my cabinet to see what they gave me for sore mouth. I had Ulcer-Ease and Lidocaine. These are both mild but might help somewhat with the gag problem if not caused by coughing up mucous. You will also need that suction machine.

Take care,
Eileen

Hi all

I asked for the suction machine a couple weeks ago, and no one seems to know what I am talking about at the hospital.

Which dept should order it?

I am having more pain the chest area this evening...not severe, maybe a 1.5 or 2.5. It worries me, but I hate to go back to ER.

I'll have a CAT tomorrow (hopefully this time correctly) with contrast to check for PE.

In the meantime, my throat is very painful. It peaks around 4.5 to 5 on the pain scale. I find myself trying not to burp, yawn or hiccup since these cause more pain.

The phelm is out of control...It is combining with the original gag problem, and causes me to throw-up 2 or more times a day.

Seth is working so hard to keep me nurished through the PEG and hydrated...I am so greatful and lucky!

My parents are here too (Did I mention it's a small NY apartment ..? But I appreciate all their help.

My sister just returned home to LA after being here for the long weekend.

I started the pain meds for the first time today to help with the throat...Seth just adds a 1/2 tsp of the liquid oxicodone to the water in the gravity bag.

I've had some serious heartburn too, but am doing better at managing it, again by using the liquid med (Zantec) in the Peg bag.

I am so glad that you all told me about the gravity bag option, I was using a bolus and what a waste, I can see some cases where it will be useful, but not for a liter of fluids! I finally got some bags after pressing for them.

I hate to be using more so many meds already, I feel dependent on them

My mom keeps liquid aloe chilled in the fridge and sprays my neck, chest and chin a few times a day.

And I started colace today today to counter side effects of the opium alkaloid.

Benedryl seems to curb a little of the throat swelling and the gag issues a tiny bit.

I don't know what to do about the chemo. I was kinda physched for it again today (not exactly thrilled to be getting more poison). But I don't want to look back in 16 months and be regretting it with a recurrance

Should I stick with the Cisplatium, at least for the 2nd round? And monitor hearing loss to see if I should change for the final round? Dr P said that he routinuely cancells the 3rd round for a number of reasons, infections, toxicity, too sick from radiation, etc.

I have the magic mouthwash, but haven't started using it yet.

I used the soda/salt/water mixture a few times a day, In fact they got me a waterpik which really helps get it in there.

I still have a fever, about 100.5 to 101.0 on average.

At ED last night my WBC was low! (1.3), and this morning it was only slightly better I think 1.5, which was the main reason Dr P held off on the next round until we revisit the issue Thursday.

Well...Sorry I haven't been keeping you all updated more lately, and trying to make up for it with this rambling post

Micheal,
It is a portable suction machine with a yankear (sp) attachment. I can't belive your radiogist does not know what it is. They also make a stationary one, but I don't think you need that. Too big and too heavy.

You need to talk to drs about your reaction to this chemo. Cisplatin is not the only option available and some us us have never had chemo. Get the stats as Gail said and consider your options. I think you may be so sick now that you are no longer making the same informed decisions. I this is the case, get your family to help you as your advocate. Being so sick during treatment can hurt you ability to argue with drs.

We all hope you are ffeling better and as I said before, take Gail's advice.

Eileen

Michael, I just walked in to the Medical Supply store in Highland, Ar.[pop 1500] and asked for a mouth suction machine. They had 1, said I needed a perscription for it, we called the Doc [from her desk abd he faxed the script] and I walked out the door. $40.00 a month rental] Someone is playing stupid with you. amy

Hi Everyone,

This is Michael's sister again. I haven't had a chance yet to thank you all for the information and encouragement that you are giving to my brother. With my entire family being with Michael in New York, and this really being the longest time we have all spent apart, combined with all of the terms, etc. it can be very difficult to absorb all of the information and ask the appropriate questions over the phone. Even though I had never posted before this weekend, I do check the site daily. It has been a great help to be able to read all of your responses everyday.

Thank you again!

Heather

HI Amy, Ive only asked the Nurse to the Med Oncologist, I'll ask the RO's nurse tomorrow.

Hi Heather, thanks for being here over the weekend! Glad you are home safe.

Michael,

What does your doc say about sticking to cisplatin vs. switching to carboplatin? I think the main argulent for switching is the hearing problems, which could be permanent and would be a real dsiability. The rest of teh stuff--nausea, etc., awful as they are, are temporary. Throwing up twice a day from phlegm was pretty standard for me during the last couple of weeks of treatment, I never found a suction machine helped much (tried one when I was in the hosptial) because my mouth was so sire and I had to have the suction up high to get that ropey phlegm and then if I accidentally hit a spot that was sore from mucositits in my cheek for example--OUCH! Constant spitting seemed easier.

It helped me to hear this:
"Dr P said that he routinuely cancells the 3rd round for a number of reasons, infections, toxicity, too sick from radiation, etc." since my third round was cancelled due to a couple of those reasons and teh rad onc. from Roswell Park told me this was not something that unusual at a major CCC either but I wasn'tr sure whether or not to believe him (I've read alsewhere that one major diff. between treatment at meading CCCs and elsewhere is that they tend to be more aggressive at CCCs even when there are risks to the patient involved--and that aggressiveness does show up in better survival rates!).

I agree with Gail about getting numbers from the docs. There is lots of really solid research showing how effective cisplat. is as a radiosenitizer but it isn't the only one that's been researched--if carnopplat. is thoght to be only a percentage point or two elss effective, if it were me, I think I'd be willing to make the switch.

Its is so nice you have all your loved ones there (except, I guess, your dogs--what are they doing right now?). Even in a small NY apt. You are very lucky! Remind yourself of your blessings--I know they may seem hard to find right now.

Nelie

thnx nellie, i dont know what 2 do about the chemo???

I'll ask the Dr, but he really says there are no easy answers.

Any references anyone has on actual statistics would be appreciated.

I am so tired still and low WBC that I don't have energy to try to make the informed decision.

As far as my dog, Zach he is here with us!

I wouldn't have come here if he couldn't be with me. He is a 98 pound black lab that we rescued about 9 months ago.

We've managed to spoil him rotten in that short amount of time :p

I am spitting several times per hour and it's getting worse, even though I have dry mouth, it's so strange!