Question re first round of chemo

notLola

Just found this site today, so new to board. Age 77 dad dianosed with stage IV EC with mets to lymphnodes, bone, blood (per his email). 3/4" tumor on inside of upper esoph. As I understand it mets are regional (armpit, upper vertebrae, don't know about the blood thing as that's brand new info). Started chemo yesterday. Carboplatin and 5FU. Also getting chemo today, tomorrow and Monday. He feels fine. Plans to golf on Tuesday if he's up to it. No changes to his normal state other than a raspy voice.

Questions:

1. Is it normal to have successive days of chemo? (Not talking about the fanny pack you go home with - he does not have that.)

2. He's very far away and hasn't talked about severity or prognosis. A chemo infusion pharmacist told me statistics point to 6mo to a year, even with chemo. Would you agree? I know anything can happen and they're just stats, but want honest opinions.

3. Pharmacist also said chemo effects are cumulative. That the first round is easier than say the third. True?

4. Any suggestions for prevention or treatment of side effects?

5. He has a huge circle of family and friends who are bombarding him with phone calls and emails, which he appreciates. Again, being so far away, any suggestions on what I can do or not do to support him? He and his wife don't want visitors until they know how chemo goes.

Thanks for any response. I find myself thinking, Is Thanksgiving the last time I'll see him? It's an awful thought.

Unknown

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notLola

unknown said:

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Thanks for the info Sherri.
Thanks for the info Sherri. I now have more questions, though. Dad says he is drinking like a fish for hydration. As long as he can do this, is hydration therapy still recommended? Since symptoms may not hit til his second round (Rx is chemo every 2-3 wks for 6 cycles), is the Zofran you refer to oral? If IV, why start it now? Does your husband continue to drink orally even with the J tube? I thought J tubes were mostly used when there is an inability to swallow or in very late stages when the patient just will not consume anything orally. Please know, I am not challenging you. I just want to understand the reasons for a recommendation. Any problems getting insurance to pay for hydration? Thank you so so much.

nancyann3

unknown said:

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I second Sherri's suggestions
You might say I am another cancer manager. Hubby age 50 dx. Feb.2010 Stage 3.

I have learned a huge amount from Sherri and everyone here. Come here and read as often as you can. You will not learn from the docs. The more you research and stay a step ahead, the smoother the ride will be.

Hubby had in-hosp. chemo first round. He had three drugs with one that ran continuous for 4 days. He now has out-patient chemo. Seems they can do it so many ways.
Hydration is huge, as Sherri said. Seems like chemo is a sponge and just drinks it up. Hubby also has j-tube it helps as a supplement or if needed, it can be used as main source of nutrition. It can also be used for hydration.

As you go down this road you will have more question. Each person is different and responds differently to chemo. Dont focus on the statistics. Put them in the back of your mind and push forward. One day at a time.

Nancy

Unknown

notLola said:

Thanks for the info Sherri.
Thanks for the info Sherri. I now have more questions, though. Dad says he is drinking like a fish for hydration. As long as he can do this, is hydration therapy still recommended? Since symptoms may not hit til his second round (Rx is chemo every 2-3 wks for 6 cycles), is the Zofran you refer to oral? If IV, why start it now? Does your husband continue to drink orally even with the J tube? I thought J tubes were mostly used when there is an inability to swallow or in very late stages when the patient just will not consume anything orally. Please know, I am not challenging you. I just want to understand the reasons for a recommendation. Any problems getting insurance to pay for hydration? Thank you so so much.

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Unknown

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notLola

unknown said:

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Thanks everyone
Wow. You guys are all so kind to take the time to respond and provide info. It's a lot to take in. This weekend I plan to draft it all in a bulleted kind of list and get it to my dad and siblings. Frankly, I don't know if Dad and his wife really understand what's coming down the road. Don't know if those around them are, in the hopes of keeping their spirits up, not preparing them for what may happen. You know, hope for the best but prepare for the worst. Anyway, thank you all so very much.

Callaloo

Echoing Sherri, another experience with chemo and hydration
I'm brand new to this board too, but before I had a chance to compose my introduction, I saw this thread and thought I'd just throw in my experience with chemo.

I had 4 rounds of Cisplatin and 5FU (fanny pack), 4 weeks apart. After the first round, I felt fine. I took all the anti-emetics I was prescribed (Emend, Zofran, plus Compazine for breakthrough nausea). I drank lots of water. I drove myself to my radiation treatments. I may have felt mild-flu-like symptoms, but felt increasingly better. I even continued working.

By the third round of chemo, the effects of radiation started kicking in and I had serious esophageal pain, which I had not previously experienced. I couldn't swallow the nausea meds, and had difficulty even drinking water. I was taking pain meds in liquid form which were constipating, and I was dry-heaving constantly (nothing came up as I wasn't eating or drinking). I had nearly unbearable stomach and intestinal pain and distress. It was made all the worse because of the fear and anxiety of not understanding what was happening to me.

Most of this I tried to conceal from my loving and caring husband. I was my own 'Cancer Manager.' I'm a lawyer, fiercely independent and self-sufficient, and have always been very healthy and fit. I didn't share my worst fears and symptoms with my husband in a misguided attempt to protect him, and also because I felt the need to take care of myself, being the control freak that I am.

Well, it finally got so bad I couldn't conceal it anymore, and hubby took things into his own hands, intervening (probably over my objections) by taking me to the clinic for IV fluids, monitoring my liquid nutrition, etc. I believe the hydration was key. Once I was adequately hydrated, I began to feel well enough to drink the Ensure and take nausea meds (pulverized and dissolved).

While the pain from the radiation continued, I was able to control the effects of chemo to the point where everything was manageable. Your dad is not undergoing simultaneous radiation, but my point is that the effects of chemo cannot be ignored, but they are manageable, with proper care. In short time, I was able to regain control over my own cancer management. But I know my husband is there should the need arise (I'm pretty much back to my old self again, but I know that can change anytime).

It was only after treatments ended that I felt really well enough to go online and read through this forum (which I actually found the day I was diagnosed, but found a lot of the posts too disturbing so I stopped reading– probably another reason to have someone else be the Manager). If I had done so earlier and read Sherri's many invaluable posts, I might have avoided a lot of suffering. That lady knows what's she's talking about, and she's so generous to share her knowledge and experience. I think the more your father and his wife know and the better prepared they are for what is to come, the less distressful it will be.

A comment about visitors and support. We had lots of visitors, local and many from out of town and far away. Quite a few stayed in our home (they were, thankfully helpful and, more importantly, self-sufficient). I appreciated them all. I sometimes was not up to visiting or even getting up to greet them, but I loved hearing their voices and laughter in the house and knowing my husband was enjoying a respite from the isolation caused by my illness.

I was most grateful for support from friends and family who took the time and effort to educate themselves about EC and provide me with well-informed discussions (as opposed to uniformed opinions).

Enjoy your Thanksgiving with your dad. I was diagnosed IVB, inoperable, incurable, in March of this year. I will be hosting our annual Thanksgiving again this year and will be cooking for a houseful, and loving every minute of it.

notLola

Callaloo said:

Echoing Sherri, another experience with chemo and hydration
I'm brand new to this board too, but before I had a chance to compose my introduction, I saw this thread and thought I'd just throw in my experience with chemo.

I had 4 rounds of Cisplatin and 5FU (fanny pack), 4 weeks apart. After the first round, I felt fine. I took all the anti-emetics I was prescribed (Emend, Zofran, plus Compazine for breakthrough nausea). I drank lots of water. I drove myself to my radiation treatments. I may have felt mild-flu-like symptoms, but felt increasingly better. I even continued working.

By the third round of chemo, the effects of radiation started kicking in and I had serious esophageal pain, which I had not previously experienced. I couldn't swallow the nausea meds, and had difficulty even drinking water. I was taking pain meds in liquid form which were constipating, and I was dry-heaving constantly (nothing came up as I wasn't eating or drinking). I had nearly unbearable stomach and intestinal pain and distress. It was made all the worse because of the fear and anxiety of not understanding what was happening to me.

Most of this I tried to conceal from my loving and caring husband. I was my own 'Cancer Manager.' I'm a lawyer, fiercely independent and self-sufficient, and have always been very healthy and fit. I didn't share my worst fears and symptoms with my husband in a misguided attempt to protect him, and also because I felt the need to take care of myself, being the control freak that I am.

Well, it finally got so bad I couldn't conceal it anymore, and hubby took things into his own hands, intervening (probably over my objections) by taking me to the clinic for IV fluids, monitoring my liquid nutrition, etc. I believe the hydration was key. Once I was adequately hydrated, I began to feel well enough to drink the Ensure and take nausea meds (pulverized and dissolved).

While the pain from the radiation continued, I was able to control the effects of chemo to the point where everything was manageable. Your dad is not undergoing simultaneous radiation, but my point is that the effects of chemo cannot be ignored, but they are manageable, with proper care. In short time, I was able to regain control over my own cancer management. But I know my husband is there should the need arise (I'm pretty much back to my old self again, but I know that can change anytime).

It was only after treatments ended that I felt really well enough to go online and read through this forum (which I actually found the day I was diagnosed, but found a lot of the posts too disturbing so I stopped reading– probably another reason to have someone else be the Manager). If I had done so earlier and read Sherri's many invaluable posts, I might have avoided a lot of suffering. That lady knows what's she's talking about, and she's so generous to share her knowledge and experience. I think the more your father and his wife know and the better prepared they are for what is to come, the less distressful it will be.

A comment about visitors and support. We had lots of visitors, local and many from out of town and far away. Quite a few stayed in our home (they were, thankfully helpful and, more importantly, self-sufficient). I appreciated them all. I sometimes was not up to visiting or even getting up to greet them, but I loved hearing their voices and laughter in the house and knowing my husband was enjoying a respite from the isolation caused by my illness.

I was most grateful for support from friends and family who took the time and effort to educate themselves about EC and provide me with well-informed discussions (as opposed to uniformed opinions).

Enjoy your Thanksgiving with your dad. I was diagnosed IVB, inoperable, incurable, in March of this year. I will be hosting our annual Thanksgiving again this year and will be cooking for a houseful, and loving every minute of it.

to Callaloo
Wow. I'm so in awe of all you fighters and what you endure. Thanks for sharing your experience Callaloo. I'm really exhausted right now so won't post more, but wanted to make sure I thanked you. I think you're amazing. Enjoy your houseful of peeps.