It was shrinking...
Comments
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Misty
Just getting the Chemo- might not be that big of a deal that the tumor doesn't get aced. If he was getting both Chemo and Rads, then y'all would have cause for concern. This is part of the delivery you are getting which I have a bit of a problem with: my Cousin supposedly had a tumor develop on the side of his head while he was getting only Cisplatin and FU-5 in a similar delivery as your husband is getting. Seems to me that's not throwing the proverbial book at the C, which is getting both the C&R right from the get-go; however, maybe down the road things will work-out for the better with your delivery.
Getting both C&R from the start might not be as patient-friendly, but I watched my two tumors only shrink until they vanished; and, over two years later, they are still gone. Everyone is different, so I could be way off-base, but I think you may want to let your Onco know of your concerns ASAP. And, you are aware of other treatment deliveries. You might wanna PM John/Skiffin, as I think he had your delivery. He knows what to expect with your's more than I. Good luck, and Prayers going forward.
kcass0 -
Perceived Observations
Are you actually seeing what you think you are seeing....or could it be perceived?
I'm in no way saying that what you describe isn't so, I don't know. I do know that I had similar results as both you and Kent.
After the first round of chemo the tumor that I had in my throat visually got larger (or so I thought)...actually that area did swell much larger and became very sore. I'm not really sure if it was or wasn't the tumor, though at the time I thought I was sure.
Anyways, I went in (like mentioned), saw my Chemo MD and she prescribed Levaquin. The swelling and inflamation went down in a few days. It only happened that first round of Chemo with me. But like you, I thought the Chemo actually triggered something and the tumor was growing rapidly all of a sudden.
By the end of my 2nd round of chemo (nine weeks in three week cycles Cisplatin, Taxotere and 5FU)), the tumor was visibly smaller. By the end of the nine week cycle of chemo, the tumor was completely gone and confirmed with a CT. It's been nearly two years post treatment (I also had seven weeks of concurrent chemo/rads, weekly Carboplatin and daily rads) after that initial nine week cycle, and still gone, NED.
Have it checked out, and hoping you are having something similar to my experience.
In re-reading your post, I wanted to add something...I would have it checked out, but wanted to add. Going in my tonsils were the primary (which came out before anything else was started), the tumor was a secondary.
My ENT went in with prescribing the nine weeks of chemo first, then the seven weeks of concurrent chemo/rads. That was in hopes of shrinking or dissolving the tumor. But if that didn't work neck dissection was a possibility. Even if the chemo/rads only reduced the tumor in size, it would be a less invasive surgery. Since the tumor dissolved, no surgery was performed (other than the up front tonsillectomy).
Best,
John0 -
JohnSkiffin16 said:Perceived Observations
Are you actually seeing what you think you are seeing....or could it be perceived?
I'm in no way saying that what you describe isn't so, I don't know. I do know that I had similar results as both you and Kent.
After the first round of chemo the tumor that I had in my throat visually got larger (or so I thought)...actually that area did swell much larger and became very sore. I'm not really sure if it was or wasn't the tumor, though at the time I thought I was sure.
Anyways, I went in (like mentioned), saw my Chemo MD and she prescribed Levaquin. The swelling and inflamation went down in a few days. It only happened that first round of Chemo with me. But like you, I thought the Chemo actually triggered something and the tumor was growing rapidly all of a sudden.
By the end of my 2nd round of chemo (nine weeks in three week cycles Cisplatin, Taxotere and 5FU)), the tumor was visibly smaller. By the end of the nine week cycle of chemo, the tumor was completely gone and confirmed with a CT. It's been nearly two years post treatment (I also had seven weeks of concurrent chemo/rads, weekly Carboplatin and daily rads) after that initial nine week cycle, and still gone, NED.
Have it checked out, and hoping you are having something similar to my experience.
In re-reading your post, I wanted to add something...I would have it checked out, but wanted to add. Going in my tonsils were the primary (which came out before anything else was started), the tumor was a secondary.
My ENT went in with prescribing the nine weeks of chemo first, then the seven weeks of concurrent chemo/rads. That was in hopes of shrinking or dissolving the tumor. But if that didn't work neck dissection was a possibility. Even if the chemo/rads only reduced the tumor in size, it would be a less invasive surgery. Since the tumor dissolved, no surgery was performed (other than the up front tonsillectomy).
Best,
John
Excellent info, which I hope will help Misty.
I must advise, though, that Levaquin is a very powerful antibiotic, which is known to have some not-so-good consequences in some patients. Did see that it was listed as a chemo antibiotic, so possibly is safer to use while getting chemo, for some reason beyond me. It is a "Black Box" antibiotic, of which numerous lawsuits have arisen. I was given it about a year, post-tx, for a cold, and only took one pill. Not for me. Funny thing is- wouldn't doubt that might be the antibiotic I was given during my hospital stay in week #6, and I got majorly well during that hospital stay.
Thanks, John
kcass0 -
Misty,
Before and During
Misty,
Before and During treatment i had a lymph node that would cycle up and down in size.
Before Treatment it was golfball sized.
The chemotherapy doctor said that it was not uncommon, and don't attach to much meaning
to it. Anyway, it gradually got smaller each time until it was barely noticeable at the end of radiation. I am wondering if that could be what you are observing, also.
I guess my question is... could it be a lymph node outside of the actual tumour that is growing and shrinking. I'll keep my fingers crossed for you.
Tonyb.0 -
Thanks everyone for all offisrpotpe said:Time
I am not sure of your treatment schedule, but if this is just the second treatment starting it to soon to see huge results. Just need to give it time, hard to do I know.
Keep the positive attitude going and all will be good.
John
Thanks everyone for all of your responses, guess we will find out Monday! He did call his oncologist today and he said not to worry right now, they will take a look Monday. We are staying positive. We are enjoying this good week!0 -
Everyone was worriedMisty35 said:Thanks everyone for all of
Thanks everyone for all of your responses, guess we will find out Monday! He did call his oncologist today and he said not to worry right now, they will take a look Monday. We are staying positive. We are enjoying this good week!
At some point, I noticed the doctors weren't smiling as much when we saw them, and I thought it was just that Doug had lost so much weight. But we were near the end of treatment and he was going to gain it back, so what's the prob?
One finally told me that they were worried because his tumor had stopped shrinking. They had removed the primary (tonsil) but the obvious secondary (lymph node in his neck) had shrunk very nicely and then stopped. They were worried that we'd have to go through a second series of treatment - he would have a tough time with that, they thought, since he'd lost about 20% of his body weight.
After a few weeks, it slowly started to shrink again - not in leaps and bounds like before, but better. The PET scan a few months after treatment showed no activity, but that could have been hidden by scar tissue. The neck dissection showed that the lymph node was basically an empty shell - scar tissue on the outside and dead, dead, dead cancer cells on the inside. It stopped shrinking because the scar tissue was holding the shape, but the cancer cells inside were still getting whacked by the treatment.
I hope that's the case for you folks - they like it when the tumor just keeps on shrinking, as that lets them know how effective the chemo is (and, therefore, how effective it is against the cancer cells that might have spread and not made noticeable tumors yet). However, a non-shrinking tumor does not necessarily mean that the treatment is not working.
Doug's tumor did seem to me to grow - I think it just became more noticeable as he lost weight. Good luck on Monday!0 -
Well we have the secondDrMary said:Everyone was worried
At some point, I noticed the doctors weren't smiling as much when we saw them, and I thought it was just that Doug had lost so much weight. But we were near the end of treatment and he was going to gain it back, so what's the prob?
One finally told me that they were worried because his tumor had stopped shrinking. They had removed the primary (tonsil) but the obvious secondary (lymph node in his neck) had shrunk very nicely and then stopped. They were worried that we'd have to go through a second series of treatment - he would have a tough time with that, they thought, since he'd lost about 20% of his body weight.
After a few weeks, it slowly started to shrink again - not in leaps and bounds like before, but better. The PET scan a few months after treatment showed no activity, but that could have been hidden by scar tissue. The neck dissection showed that the lymph node was basically an empty shell - scar tissue on the outside and dead, dead, dead cancer cells on the inside. It stopped shrinking because the scar tissue was holding the shape, but the cancer cells inside were still getting whacked by the treatment.
I hope that's the case for you folks - they like it when the tumor just keeps on shrinking, as that lets them know how effective the chemo is (and, therefore, how effective it is against the cancer cells that might have spread and not made noticeable tumors yet). However, a non-shrinking tumor does not necessarily mean that the treatment is not working.
Doug's tumor did seem to me to grow - I think it just became more noticeable as he lost weight. Good luck on Monday!
Well we have the second round of chemo down as of today, the doctor did feel around on the tumor again. He noticed what Neil and I noticed, it's a different shape now and larger. He is hoping its just lots of dead cancerous cells?! He told us to go through with treatment today and wait and see. I hate "wait and see", but am getting used to it more and more. Today was the first day I thought about a second opinion, but it may just be my anxiety kicking in and a little impatience to boot. Neil thinks he has a little cold with a cough, he has no other symptoms but this pesky little cough. It seems to me that this little cough has really came on since chemo began, any others out there with that? The doctor did mention that after this treatment and the "wait and see" they may add 5FU to his cocktail. I asked what medication, because I am scared of what I have read about csplatin. Thanks again folks!0 -
Cisplatin, 5FU and even TaxotereMisty35 said:Well we have the second
Well we have the second round of chemo down as of today, the doctor did feel around on the tumor again. He noticed what Neil and I noticed, it's a different shape now and larger. He is hoping its just lots of dead cancerous cells?! He told us to go through with treatment today and wait and see. I hate "wait and see", but am getting used to it more and more. Today was the first day I thought about a second opinion, but it may just be my anxiety kicking in and a little impatience to boot. Neil thinks he has a little cold with a cough, he has no other symptoms but this pesky little cough. It seems to me that this little cough has really came on since chemo began, any others out there with that? The doctor did mention that after this treatment and the "wait and see" they may add 5FU to his cocktail. I asked what medication, because I am scared of what I have read about csplatin. Thanks again folks!
Cisplatin does have some side effects in some people...it's powerful. But also, that's a good thing as far as the cancer treatment goes.
Just be aware of possible side effects and communicate at the first symptoms. Everyone usually has some symptoms as for the sides, but if your MD's are aware, they'll modify your regime' if they feel you are in future harms way...(or should).
One thing to do is make sure to stay up on fluids, flush your system.
5FU has it's own side effects, and just the inconvenience of having to wear the pump for 3 - 4 days. But hey, you do what you have to do....
I had both Cisplatin and 5FU along with Taxotere, three doses of each over a nine week period. Additionally Carboplatin, seven doses over seven weeks, a dose a week.
They should have given you (or at least they did me) a brochure or information on each chemo drug, it's history, origin, side effects,etc...
A lot of us have had both Cisplatin and 5FU...a few had bad side effects, a lot did not...we are all different and respond differently.
I know it's a very trying time and you want the best outcome as possible. If you trust your MD's give them a reasonable period to respond to you, answer your concerns, and explain the specifics to you both.
But if you don't or it just doesn't feel right or seem right, you are always in control and have the say on what you feel is best for you and yours.
Best,
John0 -
MistySkiffin16 said:Cisplatin, 5FU and even Taxotere
Cisplatin does have some side effects in some people...it's powerful. But also, that's a good thing as far as the cancer treatment goes.
Just be aware of possible side effects and communicate at the first symptoms. Everyone usually has some symptoms as for the sides, but if your MD's are aware, they'll modify your regime' if they feel you are in future harms way...(or should).
One thing to do is make sure to stay up on fluids, flush your system.
5FU has it's own side effects, and just the inconvenience of having to wear the pump for 3 - 4 days. But hey, you do what you have to do....
I had both Cisplatin and 5FU along with Taxotere, three doses of each over a nine week period. Additionally Carboplatin, seven doses over seven weeks, a dose a week.
They should have given you (or at least they did me) a brochure or information on each chemo drug, it's history, origin, side effects,etc...
A lot of us have had both Cisplatin and 5FU...a few had bad side effects, a lot did not...we are all different and respond differently.
I know it's a very trying time and you want the best outcome as possible. If you trust your MD's give them a reasonable period to respond to you, answer your concerns, and explain the specifics to you both.
But if you don't or it just doesn't feel right or seem right, you are always in control and have the say on what you feel is best for you and yours.
Best,
John
What John said.
If you've already had two rounds of Chemo, then I assume you already have been introduced to Cisplatin and FU-5. As John says- Cisplatin is the good stuff. My delivery was unique, in that I carried two pumps for 96-hours at the start of weeks #1 and #4, while getting rads. The pumps were Cisplatin and FU-5. Made for some rough going from the start of week #2 thru the end, but if I had my choice of druthers- I'd get the same delivery. And the reason is because they flooded me with Cisplatin right from the get-go. As John said- keep your Onco in the loop as to how it's being handled, but try to appreciate Cisplatin for what it does. I do, and I doubt that I'm alone in those regards.
kcass0 -
Right now its carboplatinKent Cass said:Misty
What John said.
If you've already had two rounds of Chemo, then I assume you already have been introduced to Cisplatin and FU-5. As John says- Cisplatin is the good stuff. My delivery was unique, in that I carried two pumps for 96-hours at the start of weeks #1 and #4, while getting rads. The pumps were Cisplatin and FU-5. Made for some rough going from the start of week #2 thru the end, but if I had my choice of druthers- I'd get the same delivery. And the reason is because they flooded me with Cisplatin right from the get-go. As John said- keep your Onco in the loop as to how it's being handled, but try to appreciate Cisplatin for what it does. I do, and I doubt that I'm alone in those regards.
kcass
Right now its carboplatin and taxotere, doctors have advised if they add another medication and change his treatment, he will more than likely carry a pump.0 -
CarboplatinMisty35 said:Right now its carboplatin
Right now its carboplatin and taxotere, doctors have advised if they add another medication and change his treatment, he will more than likely carry a pump.
From my understanding, Carboplatin is a lesser form of Cisplatin. Allowing it to be administered in longer cycles and with less side effects. That's what I had every week concurrent with the daily rads...
5FU I believe is usually given through the pump. It's just kind of slow and grueling, nothing really as for bad symptoms (at least with me), it just wears on you (literally) 3-4 days and 24/7. You hear the pump squirting the meds in you....but on the positive side. With it going in slow and steady like that. I just equated it to never giving the cancer another foot hold. There was no break in that week...
So it's all perspective, just think of the chemo as the stuff that is killing the cancer (which it is). Disrupting the growth patterns, killing it when it rests, killing it when it tries to grow, never allowing it to find a rythm to grow any longer....
Best,
John0
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