Chemo Day One YESSS
Comments
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Yesphrannie51 said:LOL Dre.....
So...Mr. Ditto....how are you feeling today? Taking all your meds to keep the nausea at bay? I know you are, you're a good patient........
p
I have "knock on wood" not had any side effects yet, i did have about a 10 minute hiccup spell last nite, checked my Chemo papers because I thought something about hiccups was in there but could not find it, so up and to Google I went. This time is was good Fyi said hiccups normal for my chemo, my age and my meds. Also said it was good because it generally meant less if any naseua. So overall doing well. Thanks for asking.0 -
US Coast Guard enlistedSkiffin16 said:Dawg..
Man, all we need now is a fly boy and coastie puddle jumper to cover the us armed forces..., LOL.
Thinking of it, I might know a fly boy on here...speak up Denny....LOL.
JG
Tour of duty.....1967-1971. Navigational Quartermaster 1st class.
1967, Govenors Island, New York City.....Quartermaster school
1968, USCG Air Station Clearwater, Fla... resided Indian Rocks Beach, FL.
1969, Icebreaker USCG Cutter Southwind...homeported in Baltimore. "Operation Deep Freeze", McMurdo Sound in the Antartic, clearing passage for cargo ships to get to scientific stations.
Winter of 69' through 1971, USCG Cutter Unimak....Cape May, NJ. Training reserves and Search and Rescue. Assisting Chief Navigational Quartermaster.0 -
Good Stuff Ditto...ditto1 said:Yes
I have "knock on wood" not had any side effects yet, i did have about a 10 minute hiccup spell last nite, checked my Chemo papers because I thought something about hiccups was in there but could not find it, so up and to Google I went. This time is was good Fyi said hiccups normal for my chemo, my age and my meds. Also said it was good because it generally meant less if any naseua. So overall doing well. Thanks for asking.
...glad to see you are doing well. Enjoy that mini-vacation ....
Keep us posted.
Best,
Tim0 -
Worked...ditto1 said:Nothing today
since the Doctors want to try and shrink my BOT tumor we are doing Chemo 3 weeks apart so basically on Cancer Treatment Vacation for 3 weeks then another Cistoplan? Chemo treatment and then will start RADS I believe a few weeks after that.
That three week cycle worked for me (as for shrinking away the tumor)... But I did also have Taxotere and 5FU along with the Cisplatin.
Only down side to that cycle...first week you feel kind of crappy, second week, not so bad and getting better, third week you feel great.
Then the weekend before is a little sucky, because you know you have to do it again...lost taste every time for a week or so, but it would come back....LOL, until rads.
JG0 -
How longSkiffin16 said:Worked...
That three week cycle worked for me (as for shrinking away the tumor)... But I did also have Taxotere and 5FU along with the Cisplatin.
Only down side to that cycle...first week you feel kind of crappy, second week, not so bad and getting better, third week you feel great.
Then the weekend before is a little sucky, because you know you have to do it again...lost taste every time for a week or so, but it would come back....LOL, until rads.
JG
before you noticed any shrinkage. The left side of my tongue has been swollen for about 4 weeks and the lympnode on the left side of my neck. The ONC nurse told me I would be able to notice maybe in just a few days. Nothing seems to have changed yet. Was that a little optomistic were you or any one else able to feel a reduction in your tumor and how long before you noticed. I know we are all different but no harm in checking.0 -
Hey TimTim6003 said:Good Stuff Ditto...
...glad to see you are doing well. Enjoy that mini-vacation ....
Keep us posted.
Best,
Tim
After my second Chemo of Cistiplan? my doctor wants me to do Epitex? I think I spelled both wrong but you know them. I read you and others had some tough side effects, acne etc. But over all how did you feel about the drug they had you on. I know others used the same drug so open to anyones reply.0 -
Clearwater to AntarcticCajunEagle said:US Coast Guard enlisted
Tour of duty.....1967-1971. Navigational Quartermaster 1st class.
1967, Govenors Island, New York City.....Quartermaster school
1968, USCG Air Station Clearwater, Fla... resided Indian Rocks Beach, FL.
1969, Icebreaker USCG Cutter Southwind...homeported in Baltimore. "Operation Deep Freeze", McMurdo Sound in the Antartic, clearing passage for cargo ships to get to scientific stations.
Winter of 69' through 1971, USCG Cutter Unimak....Cape May, NJ. Training reserves and Search and Rescue. Assisting Chief Navigational Quartermaster.
LOL, that must have taken a little whie to get used to....
All that and we both visited the Arizona in Hawaii together...(only different years)...
JG0 -
I noticed pretty quicklyditto1 said:How long
before you noticed any shrinkage. The left side of my tongue has been swollen for about 4 weeks and the lympnode on the left side of my neck. The ONC nurse told me I would be able to notice maybe in just a few days. Nothing seems to have changed yet. Was that a little optomistic were you or any one else able to feel a reduction in your tumor and how long before you noticed. I know we are all different but no harm in checking.
But my cancer is very HPV positive (almost every cell in the sample was positive). When I started, I had bad jaw, palate and tonsil pain from the cancer. Within one week of treatment, the pain was gone. Within two weeks, I could no longer feel the part of the tumor that was touching against my tongue. Hopefully you'll feel the difference just as quickly!0 -
ThanksLaralyn said:I noticed pretty quickly
But my cancer is very HPV positive (almost every cell in the sample was positive). When I started, I had bad jaw, palate and tonsil pain from the cancer. Within one week of treatment, the pain was gone. Within two weeks, I could no longer feel the part of the tumor that was touching against my tongue. Hopefully you'll feel the difference just as quickly!
my cancer came back HPV positive as well, I just had chemo on tuesday so likely getting ahead of myself to expect a big change within 48 hours. Tougue feels goofy for a lack of better way to say it, but its been that way for about a month so hard to say, mind over matter. Just would like to get some shrinkage and my reqular voice back, tired of sounding lika a Cartoon Character.0 -
JohnSkiffin16 said:Worked...
That three week cycle worked for me (as for shrinking away the tumor)... But I did also have Taxotere and 5FU along with the Cisplatin.
Only down side to that cycle...first week you feel kind of crappy, second week, not so bad and getting better, third week you feel great.
Then the weekend before is a little sucky, because you know you have to do it again...lost taste every time for a week or so, but it would come back....LOL, until rads.
JG
Doug had the taxotere with the Cisplatin but no 5FU. He will start Erbitux around the end of June when he starts radiation. Did you also take Erbitux?0 -
Ditto...I think you mean Erbitux....ditto1 said:Hey Tim
After my second Chemo of Cistiplan? my doctor wants me to do Epitex? I think I spelled both wrong but you know them. I read you and others had some tough side effects, acne etc. But over all how did you feel about the drug they had you on. I know others used the same drug so open to anyones reply.
I did have a VERY severe reaction to Erbitux (but not life threatening) and remember this, my doctor said mine was one of the worst he had ever seen ...so likely if you do take Erbitux you will not react as I did....
...now as for the type of reaction, as I said, it was not life threatening, just a HORRIBLE acne / rash / swelling from the top of my head, face, neck and down my torso to the waist. It was painful to the touch and I really could have made some money as an "extra" in a good horror movie (bc I would not have to go through make up).
I only had Erbitux and radiation for my treatment.
You did not say "why" the doctor wants you to switch of if the Erbitux was going to be in "addition" to the other chemo drug ...but I imagine you would ask that question and find out.
I think it was Kent who said Erbitux "may" be the new gold standard for HPV positive (Kent, my apologies if I have subscribed something to you that you did not say) ..and that might be why your doctor wants you to switch. HPV positive by the way is GREAT news for you my friend bc studies show HPV responds much better to treatment!!
At first I was very concerned I did not have surgery or the traditional platinum chemo drugs ..but after reading many posts here, seeing the longterm side affects of the platninum chemo drugs (numbness, slower healing of the throat, just to name a couple) I think now I know why the doctors chose the treatment they did (though personally I would have liked to had a little more say in the choice...or at least an explanation of why the treatment I was going to get).....
...to be fair to the doctors ...having a wife and five kids and going to be over 100 miles from where my treatments were going to take place ...I had my hands full "getting ready" and was quite scrambled worried about them and making sure I left them set before I left. My wife had not worked outside the home for 14 years...
I digress....
So I covered my reaction (remember mine was unusually severe) ....and I did get an all clear PET / CT on May 7th (first one after treatments) and my ENT also gave me an all clear on May 10th with a scope and finger exam....so I can't complain about the drug or the treatment. I really liked my doctors and they showed great concern and patience with me.
Do your homework, ask lots of questions and be engaged.
By the way...I'm really stoked you came back HPV positive...you're doing great!!
Tim0 -
Thank you forTim6003 said:Ditto...I think you mean Erbitux....
I did have a VERY severe reaction to Erbitux (but not life threatening) and remember this, my doctor said mine was one of the worst he had ever seen ...so likely if you do take Erbitux you will not react as I did....
...now as for the type of reaction, as I said, it was not life threatening, just a HORRIBLE acne / rash / swelling from the top of my head, face, neck and down my torso to the waist. It was painful to the touch and I really could have made some money as an "extra" in a good horror movie (bc I would not have to go through make up).
I only had Erbitux and radiation for my treatment.
You did not say "why" the doctor wants you to switch of if the Erbitux was going to be in "addition" to the other chemo drug ...but I imagine you would ask that question and find out.
I think it was Kent who said Erbitux "may" be the new gold standard for HPV positive (Kent, my apologies if I have subscribed something to you that you did not say) ..and that might be why your doctor wants you to switch. HPV positive by the way is GREAT news for you my friend bc studies show HPV responds much better to treatment!!
At first I was very concerned I did not have surgery or the traditional platinum chemo drugs ..but after reading many posts here, seeing the longterm side affects of the platninum chemo drugs (numbness, slower healing of the throat, just to name a couple) I think now I know why the doctors chose the treatment they did (though personally I would have liked to had a little more say in the choice...or at least an explanation of why the treatment I was going to get).....
...to be fair to the doctors ...having a wife and five kids and going to be over 100 miles from where my treatments were going to take place ...I had my hands full "getting ready" and was quite scrambled worried about them and making sure I left them set before I left. My wife had not worked outside the home for 14 years...
I digress....
So I covered my reaction (remember mine was unusually severe) ....and I did get an all clear PET / CT on May 7th (first one after treatments) and my ENT also gave me an all clear on May 10th with a scope and finger exam....so I can't complain about the drug or the treatment. I really liked my doctors and they showed great concern and patience with me.
Do your homework, ask lots of questions and be engaged.
By the way...I'm really stoked you came back HPV positive...you're doing great!!
Tim
taking time to reply. The Other Ditto is keeping me on track for much of this, but I knew you had some insight. Yes I hope I can avoid the serious side affects you dealt with. But seems everything has some type of side effect. Im having my Chemo hiccups as I type this reply, not so severe but aggrivating none the less. God Bless.0 -
How It Went...TheOtherDitto said:John
Doug had the taxotere with the Cisplatin but no 5FU. He will start Erbitux around the end of June when he starts radiation. Did you also take Erbitux?
Brief history...Tonsils were the primary and were taken out first thing... I als had a secondary tumor that popped up on the same side, visible and you could feel it...like a half of a grape in size. That happened a few weeks before I finally went to an ENT, GP did nothing but prescribe antibiotics which were doing nothing.
They opted to wait and see what effects the chemo and chemo/rads would have on it before going for a dissection.
The first week of the big three, the tumor actually became inflamed and swollen...talk about scary. Anyways they never really figure out what went on, but the prescribed Levaquin and it went down and wasn't swollen (other than how it had been).
The sixth week of the nine week cycle, you cound't see the tumor any longer, and really had to feel around to find it.
By the end of the nineth week it was gone, couldn't feel it at all. The MD orere a CT and it was completely gone... I haven't had any signs since, that was over three years ago....and hoping it stays gone.
I didn't have the Erbitux....
I haven't heard of it being "The Gold Stansard"...., mostly what I have read (other than the clinical trials). Is that it is used in cases where patients were having problems with the tradional platinum based chemo (cisplatin, carboplatin). Also, as showing good results and frequently used as a next line of defense for recurrent cases, or where patients didn't respond well with the platinum based.
That was a few years ago, maybe they are using it more as a front line treatment now.
JG.0 -
Timditto1 said:Thank you for
taking time to reply. The Other Ditto is keeping me on track for much of this, but I knew you had some insight. Yes I hope I can avoid the serious side affects you dealt with. But seems everything has some type of side effect. Im having my Chemo hiccups as I type this reply, not so severe but aggrivating none the less. God Bless.
The plan of 2 cycles of Cisplatin and Taxotere, then radiation/chemo combo with Erbitux was discussed before the pathology results from the 2nd biopsy results were in so not sure the HPV status had any bearing on the plan previously laid out. The reason for the 2 cycles of Cisplatin was to try and shrink the tumor so that the radiation field wouldn't have to be so wide. He is currently scheduled to use a 4 point mask. The concern was potential radiation damage to the muscle running down the left side of his neck to his shoulder area and the weakness/immobility it may cause to his left arm. Doug is a right leg above the knee amputee due to polio as an infant and uses his arms to get around on his crutches and wheelchair so they are trying to minimize the radiation damage to his extremities. His medical oncologist has been conferring with a doctor at John Hopkins on the treatment plan for Doug. We have a follow-up visit with the medical oncologist next Tuesday because he wants to stay on top of any neuropathy symptoms that may begin from his first treatment since the neuropathy side effect would not be reversible. If Doug has any symptoms then they won't administer the 2nd cycle of Taxotere and Cisplatin.0 -
Sounds like you are in great hands .....TheOtherDitto said:Tim
The plan of 2 cycles of Cisplatin and Taxotere, then radiation/chemo combo with Erbitux was discussed before the pathology results from the 2nd biopsy results were in so not sure the HPV status had any bearing on the plan previously laid out. The reason for the 2 cycles of Cisplatin was to try and shrink the tumor so that the radiation field wouldn't have to be so wide. He is currently scheduled to use a 4 point mask. The concern was potential radiation damage to the muscle running down the left side of his neck to his shoulder area and the weakness/immobility it may cause to his left arm. Doug is a right leg above the knee amputee due to polio as an infant and uses his arms to get around on his crutches and wheelchair so they are trying to minimize the radiation damage to his extremities. His medical oncologist has been conferring with a doctor at John Hopkins on the treatment plan for Doug. We have a follow-up visit with the medical oncologist next Tuesday because he wants to stay on top of any neuropathy symptoms that may begin from his first treatment since the neuropathy side effect would not be reversible. If Doug has any symptoms then they won't administer the 2nd cycle of Taxotere and Cisplatin.
.....and that paints the picture with more color!
Sounds to me theotherditto like you are in great hands from the doctors. They certaily have more things to consider... .....and sounds to me ditto like you are in great hands with theotherditto .
Well be sure and keep us posted .....Doug (a.k.a. Ditto) ...we are with you buddy and prayers are going to keep coming for you and theotherditto.
Tim0
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