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Update on treatment

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Again, want to thank everyone for their support on here. I just completed #22 of 33 rads and last tuesday had my 2nd of 3 chemo's with cisplatin. Today I think was my last day of getting of the chemo. Kicked in about Friday and spend the weekend sleeping and trying not to be nauses. (I.E. Don't move a muscle. LOL) I never got sick but you know that feeling of any second I could.... Yesterday and today was a lot of mucus but not so nausea today. The Dr. is calling me the star student. I have lost 1 pd in 3weeks. I still do 2 milk shakes a day and 4 tube feedings but think the milk shakes is about to go down to 1 a day. Throat is getting sorer. Use Miracle mouth wash 4 times a day and rinse several times with water, baking soda and salt followed by biotene mouthwash. Outside of neck is getting redder. I put Aloe and Vitamin E oil. Naps are more frequent. So I do and do not know what to expect.
I know the throat will get worse outside and in. I know the tiredness will increase. Not sure how bad the 3 chemo will be since the last rad will be happening. I have chemo on the 22nd and Last rad on 24th. I know ya'll have said that the 2 weeks following are pretty rough. Is that because of both the chemo at the end or is just the radiation that gets you? I do know one thing from ya'll. I know that everyone is different and treatment is also.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Hang in there you are almost all the way through; 22 of 33 you only have 11 treatments left and you sound like you are doing great.

doitforoj's picture
doitforoj
Posts: 63
Joined: Sep 2009

Thanks Hondo, feeling good. I will be thinking about you tomorrow. Your a fighter and your rewards will come.

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

The problem with the last two weeks -- and the three or four weeks thereafter -- is the cumulative effect of the radiation. If you're a cook, you'll understand: When your radiation ends, it's something like cooking a roast beef. You remove it from the oven and let it "rest" for a bit, because it's still cooking inside. That's what happens with radiation. It ends, but your throat is still cooking.
Thanks to Emend, the anti-nausea drug, my two rounds of Cisplatin weren't too awfully bad (though the after-effects kinda sucked). It was the radiation that really kicked my butt.
But you know what? After about three weeks post-treatment, things began to get better. And they kept getting better day after day, week after week. In about three months I was darned near back to normal.
Hang in there. You'll make it.

--Jim in Delaware

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

doitforoj- the chemo and rad combo days were the worst for me- look at my profile for the particulars on my treatment. It was the week after the first 24/7 x 4 days with the chemo pumps that I got sick, then the two weeks after the second round of chemo days. I was able to recover while getting only rad over the last three weeks. But, the post-chemo week(s) was tough. I was too sick to get rad in week #5, and week #6 began with a 4-day stay in a hospital, so no rad that week, either. For me, it was the Cisplatin that seemed to make me the sickest, and I was getting rad while carrying the chemo pumps for the 8 days, total, so that's why I figure it was the combination of the two at work where I was getting the rad.

Everybody is different, I guess. My C was NPC. By the time of my last three partial-rads I was doing much better, and returned to work a month later. Jim's experience was somewhat different from mine, but you'll be able to deal with what is coming. We did- we all did, and so will you. And those after-effects of the chemo Jim mentioned will not be easy, but there are prescrips to help get you thru it- don't hesitate to use their help.

Believe you will, and thus you can.

kcass

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

It was about here that I couldn't get anything past my right tonsil. The cold of the milkshake really set me off. Your're doing great!! Your weight maintenance is remarkable, keep it up.

pk's picture
pk
Posts: 192
Joined: Aug 2009

Sounds like you are doing very well. My husband found that until after 2-3 weeks after treatment things didn't really get too much better because the radiation is still working. However, those weeks post - you don't have to go to treatment and that is a real plus. After that things start to improve slowly.
My husband is about 10 weeks post and today he ate bacon, eggs, toast and milk for breakfast - a patty melt and a few french fries for lunch - mashed potatoes, meatballs, fresh green beans and milk for dinner. He told me that almost everything he ate he could taste. He still has a little discomfor every now and then. but is no longer using pain meds on a regular basis. So you can see that things will get better. He also was a star student. Once he embraced what he needed to do, he just plain went forward.
PET scan on Jan 5th and we are optimistic.
You are almost there. Hang on and Hang in. PK

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Hi DF,

I can just reinforce what the gang has said above. You sound like you're doing well. I Lost 44lbs (20kgs) so from 92kgs to 72kgs. You can obviously rely on your tube to keep the calories going in if you can't take anymore shakes by mouth.

I found weeks 4-6 the worst during treatment and then the first two week out Post Treatment where I crashed and burned big time. Even though you are relieved to get out of the Mask and routine of therapy, I didn't feel well at all and the expectations of starting to recover were all dashed (in my mind) but be assured that will pass through any such period, just be ready for it as it may present as a very low period for you.

Seeing that you have a been a 'Star' you may defy this and sail on through and I hope you do.

I am find ing things improve by the week (as per Jims's note) so measure your improvement as such NOT by the day but by the week other wise it can do your head in. Eating slowly improves but you may have the dry mouth and other taste and texture issues many of us have got.

I am 9 weeks out today and had my tube pulled out last Monday and had a 'Clear' result for my PET CT on the Tuesday so all going well. I eat a range of soft veges, tofu, rice (Pref brown) some fish and always with a soup or broth to help with the mastication as I have the dry mouth due to damaged Salivary Glands.I will soon look into getting some of the weight gaining shakes as the healthy diet I am maintaining doesn't help with weight gain.

Most healthy anti-cancer diets are almost entirely vegetarian and as you know you don't see too many 'fat' vegetarians walking around. I see on these pages some folks are sticking to anti-cancer diets while other are into what ever they can including junk food. THat is your choice but you sound like you are doing great on the weight maintenance.

I hope this little bit of info help a bit. All the best and keep in touch.

Regds
Scambuster

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