Anyone on Paclitaxel? Does it work better?

Posted by hopingforned @hopingforned, Mar 12 4:29pm

Dad (69) had been to different doctors complaining of pain when swallowing (diagnosed with dysphagia and given Omeprazole) for about a year before he was finally scheduled for an endoscopy after losing 15 lb in a few weeks. He’s an overall healthy guy, with previous melanoma (cured) and heart problems (currently on medication).

He was diagnosed with stage 4 squamous cell carcinoma of the esophagus in October 2023. He had two masses in his esophagus, several impacted regional lymph nodes, and distant spread in his left hip, tail bone, and thoracic spine. He had a biopsy of the hip lesion confirming esophageal cancer. He started FOLFOX + Opdivo in early November and 10 photon radiation treatments on his esophagus (upper mass only) and thoracic spine in December.

His first follow up CT/PET scan in January showed primary mass was completely gone, and the secondary had shrunk. The lesions in the thoracic spine and hip bone were also gone. The lesion in his tail bone remained stable. There were 4 new lymph nodes in left neck that lit up, but small to confirm the same cancer so it was concluded it may be an infection unrelated to the cancer.

In his second scan in early March, the 4 lymph nodes were bigger, all 3 bone lesions were back and bigger compared to the previous scan, there was a new lesion in his left chest (close to his neck) and the secondary tumor in his esophagus is growing again. In the follow up appointment it was determined that the current treatment is not working and other options should be considered. He is going to start Paclitaxel only, no immunotherapy, and no plans for additional radiation.

My dad had minor side effects, the worst of which was fatigue. Since radiation, he’s been able to eat and has been able to maintain his weight.

No one in our extended family has had cancer so this was new territory for everyone.

Has anyone had experience switching from one treatment to another? What about Paclitaxel?

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

Hi. My husband that a similar diagnosis at about the same time as your dad, the cancer is adenocarcinoma instead spread to 3 spots of bones. He went through 8 Folfox infusions over 48 hous every 2 weeks. January CT scan (primary tumor had shrank). February, he changed doctor and started been treated with Mayo clinic, where they changed to Xeloda until next testing April.
I understand is very common to change treatments, sometimes the side effects or damage of the nerves in case of FolFox compared with the results is not worth it.
Doctor keeps many "tools" in the box to be use in case the patient doesn't respond to treatment.
Did your dad between January and March, did any kind of maintenance treatment?

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Yes... treatments must be changed once the first line treatments are no longer showing progress. And progress can mean that existing cancer is being held in check... not going away, but also not growing more and spreading more (that is also considered a win). But expect more changes, to Capecitabine pills (Xeloda)... which is a different form of the 5FU he got in Folfox. Also, sometimes the Oxaliplatin is changed out in Folfox for Irinotecan, which now makes the Folfox into Folfiri. And then there is Cisplatin, Carboplatin, Taxotere, Epirubicin, etc. And they may combine these with different immunotherapies as well... even when the patient may not be Her2 positive or show high PDL1 expression.

But still, an uphill battle unless one of these regimens takes care of all spread, and the patient can become surgery eligible. This is rare, but does happen. We just need to see the patient's body and cancer respond to these treatments.

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@jcrs

Hi. My husband that a similar diagnosis at about the same time as your dad, the cancer is adenocarcinoma instead spread to 3 spots of bones. He went through 8 Folfox infusions over 48 hous every 2 weeks. January CT scan (primary tumor had shrank). February, he changed doctor and started been treated with Mayo clinic, where they changed to Xeloda until next testing April.
I understand is very common to change treatments, sometimes the side effects or damage of the nerves in case of FolFox compared with the results is not worth it.
Doctor keeps many "tools" in the box to be use in case the patient doesn't respond to treatment.
Did your dad between January and March, did any kind of maintenance treatment?

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Thanks for responding. Dad had 8 Folfox infusions and 9 immunotherapy infusions. Similar to your husband, these were biweekly. The only time he ‘took a break’ was to allow for radiation of the primary tumor as he had trouble swallowing.

He had some neuropathy in his hands, but it seemed to go away as soon as infusion is complete +3 or 4 days.

Doc didn’t strike me as optimistic, although he says he is based on how dad’s been handling treatment.

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@mrgvw

Yes... treatments must be changed once the first line treatments are no longer showing progress. And progress can mean that existing cancer is being held in check... not going away, but also not growing more and spreading more (that is also considered a win). But expect more changes, to Capecitabine pills (Xeloda)... which is a different form of the 5FU he got in Folfox. Also, sometimes the Oxaliplatin is changed out in Folfox for Irinotecan, which now makes the Folfox into Folfiri. And then there is Cisplatin, Carboplatin, Taxotere, Epirubicin, etc. And they may combine these with different immunotherapies as well... even when the patient may not be Her2 positive or show high PDL1 expression.

But still, an uphill battle unless one of these regimens takes care of all spread, and the patient can become surgery eligible. This is rare, but does happen. We just need to see the patient's body and cancer respond to these treatments.

Jump to this post

Thank you. I hope it does. I hate to see him losing hope as he’s always had a very optimistic outlook.

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@mrgvw

Yes... treatments must be changed once the first line treatments are no longer showing progress. And progress can mean that existing cancer is being held in check... not going away, but also not growing more and spreading more (that is also considered a win). But expect more changes, to Capecitabine pills (Xeloda)... which is a different form of the 5FU he got in Folfox. Also, sometimes the Oxaliplatin is changed out in Folfox for Irinotecan, which now makes the Folfox into Folfiri. And then there is Cisplatin, Carboplatin, Taxotere, Epirubicin, etc. And they may combine these with different immunotherapies as well... even when the patient may not be Her2 positive or show high PDL1 expression.

But still, an uphill battle unless one of these regimens takes care of all spread, and the patient can become surgery eligible. This is rare, but does happen. We just need to see the patient's body and cancer respond to these treatments.

Jump to this post

First, I want to thank you and others how you share all the knowledge. The more research and knowledge when talking and able to ask questions to the doctor the better you are.
In my husband's case, doctor already said it will be almost a miracle if he will be eligible for surgery. We have to be realistic and live with keeping the cancer cells not spreading out of control is a great situation.
Even thought the tumor or lesions are diminish to the point that testing doesn't pick up, he will always have cancer cell in his bloodstream and could pop out anywhere unfortunately.

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@hopingforned

Thank you. I hope it does. I hate to see him losing hope as he’s always had a very optimistic outlook.

Jump to this post

As a caregiver is hard too.
And sometimes you don't know what to say as well.
This disease is a roller coaster of emotions, hope, treatments and testing...and nobody has a crystal ball to prepared you for what is coming ahead. Love

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Unfortunately, Paclitaxel didn’t work. The cancer spread to his liver, ribs, right hip, and additional lymph nodes in his chest. There are so many new lesions it’s hard to keep track. He was extremely tired the first week after receiving treatment, got neuropathy in his finger tips and feet, and lost his hair. The worst part was the neuropathy in his feet. He was not able to go for his daily walks (weather permitting), which is the only thing keeping him active. He lost hope after FOLFOX didnt work and has not gotten it back. It’s hard to watch him like that. My dad used to be an optimist, rarely without a smile on his face, until recently. He told the doc “that’s life” when talking about the fact that two treatments so far have not worked.

He has maintained his weight, for which I credit my mom. She’s pushing as much as she can and he finds it hard not to eat her delicious meals.

He’s on FOLFIRI now. He just had his first dose and has been tired since the pump was removed 3 days ago. He’s still dealing with residual neuropathy. We’re looking into clinical trials, hoping for more time with dad.

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