Good to hear she's at farber where are the tumors? Tongue and neck? Scarring is nothing when your Life is on the line... If the tumor is on the oral tongue and they offer surgery it's a good idea to Take it as oral tongue cancer is usually treated with this first then follow up treatment with rads an chemo. With three tumors rads is almost definite.
Write everything own including questions a bring your notebook when you go to appointments.
Our hospital has a system whereby they have a Card with your number and all appointments are computerized so they print out a List of all upcoming appointments each time you in - ask if h Mre something similar. Best of luck

Hi LB

Good girl!! wish we had had one of you. That you are so on top of everything and treatment hasn't even started yet, puts you well ahead of the game.

My thoughts re the needles is to get the port. One thinks "ah yes, it will just be a couple of IVs on chemo days - not so bad" turns into "what, you need another blood test?". Alex and I did it both ways after his PICC (same as a port) failed after chemotherapy and he elected to go without for the rest of the treatment which was all the chemoradiation. We spent the entire 7 weeks telling each other that it was "just one more" and every week there was another reason to stick him with a needle. If your Mum's veins aren't that crash hot in the first place, this might be even more reason to do it. It also cuts treatment time down a bit as you don't have to wait for a nurse to insert the IV, you won't stuff around with the inevitable day when the nurse can't find a vein or the vein she DID find collapses. In my opinion, it is just one less stress that your mum needs to deal with.

The questions often come just AFTER you have walked out of the doctors rooms, so I would suggest you carry a book, or some other device to record your thinking. This way, whatever you thought of can be immediately written down and asked either via email or at the following appointment. My book was small enough to live in my handbag and had a little pocket to stick the inevitable loose notes that are collected.

I had a couple of sections: One to write down what the doctor said at the appointment and sometimes for them to draw pictures if I didn't understand; one to write down questions as I thought of them and one for appointments and things ToDo.

I also had a big piece of paper with the names of all the drugs and the doses broken into squares for morning, lunch, evening and before bed and Alex would put his drugs on top of the paper to make sure he had them all before he took them. Alex got very confused during his chemo and I was not always around to supervise.

I also found that writing a sort of journal helped as it kept my head straight and when I needed to tell the doctor which pain killer Alex had last week, I was able to name it AND tell the doctor my interpretation of why it was prescribed.

It also came in handy when I went into battle with the hospital but I'm sure this won't happen to you

Regarding informing family and friends: elect someone you trust to tell, and then let them organise the logistics of how to get the information out to those who need to know. I told 4 people what was going on - my boss who shared with those who needed to know at work; Alex's mother who shared with family and friends in New Zealand; my mother who shared with friends and family in Newcastle and one of Alex's scaly mates from the pub who put the word out around the local traps. I also wrote very long emails to a friend in Melbourne, but that was more to vent than share information

Now that I am a facebooker (:)) I would probably recommend that updates be put on a private group there too.

Cheryl and klo, thanks for the feedback. You're great! If it were me (or my sister) with cancer, treatment at Dana Farber and getting the PEG and the port would NEVER even be questions. But my mom is concerned about all these things, so my sister and I are trying to provide her with all the pluses and minuses so she can feel comfortable with her decisions.

Will respond to your other comments and questions later today, when I'm sitting down and reviewing everything.

HI Littlebird,

I'm a male, nearly 74, and I've been dealing with Oropharyngeal cancer since August, '09. I've actually had it much longer, but didn't get diagnosed until I was stage IV.

I immediately picked up the fact that your mother likes to keep in shape. You've no idea how important that can be to a cancer patient, believe me, it''s HUGE!!!

So let me start with advice that is counter to what everyone else will tell you. That is, do whatever you can so that your mother can continue to exercise while going through this process. It can be done and other than the first time I was treated, I haven't missed a workout due to chemo. When I get too tired to do any more, I quit and go home.

I've had a lot of chemo (Carboplatin and Taxol; carbo & Taxetere; and finally Xeloda (a pill form of 5FU.) I have felt fine 99% of the time - other than tired - and utterly no nausea (other than the Cisplatin). Once one has experienced Cisplatin, one will understand the benefit of that "no nausea." Read my intro (dated today) for more on this.

I'll bet that the first Chemo agent they use will be Cisplatin. Obviously, if I had the hindsight to do so, I would have refused the port and gone to the gym. As it is, the port has a tube that goes directly into the Jugular Vein - you don't want to pull it out and bleed to death internally, so you are restricted to lifting less than 10 lbs while you have a port. She could continue to swim if she didn't have the port.

Without working out, nausea will be a real problem. I lost 38 lbs because I simply could not keep anything down beyond a single bottle of Ensure plus (350 calories). The port is nice, but being able to work out is nicer.

My cancer came back after 17 months. That time, I refused a port and got an IV once a week for three weeks in each cycle, and I had 5 cycles that time and worked out. That time I got the Carbo/Taxol/Taxetere cocktails. I advised a woman in MI at the time, who was undergoing the exact same cocktail; she spent the first 5 days after each infusion in the fetal position. She did not work out.

After the end of my second cycle of that cocktail, I had a conference with my MO who asked me how I was tolerating the current chemo. I mentioned that I had noticed a bit more hearing loss, but more concerning to me was the fact that I was starting to get exhausted mid-way through my weight-lifting workouts.

He nearly fell on the floor laughing. When he stopped, I asked what was so funny? He explained that in over 20 years, he'd never had a patient use "Chemo" and "workout" in the same paragraph! Draw your own conclussions.

This brings up another point, the importance of proper nutrition during the survival process, and survival is the name of this exercise. Surviving any life-threatening event is an energy-intensive activity, and the need always comes when one is least able to acquire the needed energy. This forces the body to consume muscle and weakens it overall. Ensure (or equivalent) is a good solution. Jevity (the product that is fed through a PEG) is another.

klo gave excellent advice about being Pro-Active. Take nothing for granted and question everything. Doctors do good work and having saved my life on a number of occasions, I won't condemn them here, but do pay attention and follow up on every promise. Don't assume that because a doctor says something will happen, that it will. You will have to follow up and hold their feet to the fire to make things happen as they say they will.

Finally, to you and the world at large, medical grade cannabis is a life-saver. While I was taking Cisplatin, I would not even have been able to keep a single bottle of ensure down, so severe was my nausea. My doc tried three very expensive anti-nausea drugs but each seemed to make things worse. Finally, I got some cannabis indica and that gave me immediate relief and made it easy to sleep. Avoid the synthetic crap that can be obtained legally, it does nothing for me.

I don't think working out has anything to do with how you react to chemo, in that case, I should never had a problem. I ran, biked, swam, boxed, and lifted weights, since I was 15, amongst several martial arts programs in between, and all my jobs required me to be physicaly fit, and be a deterrent, sometimes physically. I started chemo at 245 lbs, and after a severe reaction to the same chemo, Taxotere, Cisplatin. 5-FU, near death, I was 130lbs in less than a month. The side effects are too numerous to list. I think of it similar to an allergic reaction, some have no problems to certain foods, and some do. Can't do much to change that, just change the food, limit amount of exposure, duration, in this case toxin, if you can, and sometimes all it takes is once, and that's why they give you all the other meds to lessen the toxicities and side effects.

[quote=PaulB]I don't think working out has anything to do with how you react to chemo, in that case, I should never had a problem. I ran, biked, swam, boxed, and lifted weights, since I was 15, amongst several martial arts programs in between, and all my jobs required me to be physicaly fit, and be a deterrent, sometimes physically. I started chemo at 245 lbs, and after a severe reaction to the same chemo, Taxotere, Cisplatin. 5-FU, near death, I was 130lbs in less than a month. The side effects are too numerous to list. I think of it similar to an allergic reaction, some have no problems to certain foods, and some do. Can't do much to change that, just change the food. In this case toxin, if you can, and sometimes all it takes is once, and that's why they give you all the other meds to lessen the toxicities and side effects. [/quote]

Hi Paul, you make a good case; and I'm sure that that is very likely the case with you. But I am not convinced that this (allergy analogue) is the case in all, or even most cases; the reason being the dramatically different reactions in my case, between not working out during the chemo and doing so during the chemo.

May I ask if you continued to work out while you were being treated?

My MO and I have discussed this at length, and he is convinced to the point that he has started advising his patients to give it a try.

But you do make another good point, that being that no protocol is a "one size fits all." What works well for one patient may not work at all, and may even prove counter-productive for others. But working out can not hurt (cause further harm) if one can do it; but it can help.

I offer this in the hope that it does. It definitely helped me enormously.

Please, lets not get too off track with this thread. Lets focus on the original poster's (littlebird) questions and concerns. Any side discussions can always be put on a new thread and discussed there or taken to private messages (PM's).

Thanks, guys. You've made me laugh! A good work out for my mom is doing yoga, walking with one pounds weights, or swimming. I'm not worried about her getting exhausted during any weight training sessions. ;-) I do worry about nutrition because she is at the bottom of the healthy weight range for her height. I don't think that she can afford to lose even 8 pounds (and clearly the rad oncologist thought so too at the visit on Thursday), and I worry about the blood sticks not because of a fear of needles, but because she has lymphadema in one arm and limited access in the other. She's afraid of reduced vein access.

She's been resistant to both the PEG and the port, but I think she now accepts (as of this morning) that both will be necessary tools during treatment. Or at the very least, lesser evils than dehydration or high anxiety during blood draws or IVs. It's a huge weight off my shoulders. She was extremely angry/stressed/unhappy when the IV took 3 attempts last week.

On Monday, she has exploratory surgery - endoscopy to look at vocal cords, etc., plus a biopsy in the tumor to test for HPV. I'm off the get groceries including ice cream, popsicles and soft foods for the week. Is there anything that I should bring for the car ride back home (which will take about 2 hours due to the red sox season opener)? Or anything that I should have here in the house?

Hi again, Littlebird,

Your mom works out smart! Congratulations!

I'd add some ensure plus (350 cal/bottle). Easy to take, even just as a weight gain supplement. You might also stop into a shop that sells supplements to bodybuilders for weight gain, and run the nutritional information by your MO to ensure that there is no problem with taking it.

Bananas are good for weight gain, but again, check with your MO.

lb, so sorry u need to be here but glad u found it before trmnt. one very important thing for your mom to remember is to eat as much as she can while she is able. also, stay hydrated. both of those are extremely important. I can't really add any other info b/c my cancer was different but the rad will make it hard for her to eat. it will also make food taste bad or not at all. I wish you the very best as you go down this road and pray for you, your mom, and your family. it is a rough road but it is doable. I will keep you all in my prayers.

debbiejeanne