NHMike wrote:I had a generally crummy day yesterday but was able to function.
I also had some potato chips last night. The purpose was to avoid diarrhea, and this worked nicely, and to avoid calf cramps overnight, and this worked out too. Bear in mind that I also had 400 MG Mg yesterday morning. I'm taking additional Magnesium and Calcium via tablets and Magnesium, Calcium, Sodium and Potassium via Nuun tablets in warm water. I hate not being able to drink cold water. Pushing onward for the last Oxaliplatin infusion effects.
I'll be really annoyed if the oncologist wants to do one more.
I think that tree nuts have a much bigger effect than Oxaliplatin on recurrence. But there's no guarantee that patients will continue eating them in the future. I eat them because I like them and Costco sells them in large quantities.
Caat55 wrote:NHMike wrote:I had a generally crummy day yesterday but was able to function.
I also had some potato chips last night. The purpose was to avoid diarrhea, and this worked nicely, and to avoid calf cramps overnight, and this worked out too. Bear in mind that I also had 400 MG Mg yesterday morning. I'm taking additional Magnesium and Calcium via tablets and Magnesium, Calcium, Sodium and Potassium via Nuun tablets in warm water. I hate not being able to drink cold water. Pushing onward for the last Oxaliplatin infusion effects.
I'll be really annoyed if the oncologist wants to do one more.
I think that tree nuts have a much bigger effect than Oxaliplatin on recurrence. But there's no guarantee that patients will continue eating them in the future. I eat them because I like them and Costco sells them in large quantities.
The calf cramps are crazy aren’t they? I tried to eat a banana after infusion but it tasted awful .i notice a metallic flavor this time. I have two to go. It must feel so great to have it done!!!
NHMike wrote:... I'm waiting for a month after the reversal ..
O Stoma Mia wrote:After your last round of chemo who will be in charge of your comprehensive 5-year survivorship plan? Your oncologist? Your surgeon? Your GP? Hopefully it wil be somebody who cares about your overall QOL over the next 5 years
Somebody needs to be in charge and needs to create a comprehensive Survivorship Care Plan (SCP) for you. Who will that be?
NOTE: The "SCP- Survivorship Care Plan" was featured in a special session in the 2018 Call-on-Congress meeting:Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Session Presenter:
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer
How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan? The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.
Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources
Ref: https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/11/2018-ConC-Breakout-Sessions.pdf
Also, ASCO has a list of recommended questions to ask your doctor as you are transitioning from treatment to follow-up. Click on the Reference link at the very bottom to know more.
.Questions to Ask the Doctor
To learn more about follow-up care for colorectal cancer, consider asking the following questions of your health care team:
What is my risk of recurrence?
What follow-up tests will I need, and how often will I need them?
Who will be coordinating my follow-up care?
If I move or need to switch doctors, how do I make sure to continue my recommended follow-up care schedule?
How often will I need CEA testing? Where will it be done?
How often do I need a CT scan? Where will it be done?
How often do I need a colonoscopy? Who will do it and where will it be done?
How often do I need a rectosigmoidoscopy (rectal cancer only)?
What signs and symptoms should I watch for?
What type of follow-up care do I need beyond five years after treatment?
Where can I find more information about follow-up care?
Ref: https://www.journeyforward.org/follow-care-colorectal-cancer
O Stoma Mia wrote:NHMike wrote:... I'm waiting for a month after the reversal ..
So, do you have a date scheduled for your reversal?
Also, do you know who will be in charge of your follow-up schedule, and whether he/she will have a plan for you?O Stoma Mia wrote:After your last round of chemo who will be in charge of your comprehensive 5-year survivorship plan? Your oncologist? Your surgeon? Your GP? Hopefully it wil be somebody who cares about your overall QOL over the next 5 years
Somebody needs to be in charge and needs to create a comprehensive Survivorship Care Plan (SCP) for you. Who will that be?
NOTE: The "SCP- Survivorship Care Plan" was featured in a special session in the 2018 Call-on-Congress meeting:Treatment Summaries and Survivorship Care Plans (TS/SCPs): Symptom Management and Surveillance
Session Presenter:
Andi Dwyer, University of Colorado
Director of Health Promotion, Fight Colorectal Cancer
How are colorectal cancer survivors supposed to manage their medical care after treatment ends? It is recommended by several professional cancer organizations that at completion of treatment, patients receive a summary of what treatments they have had in addition to a detailed plan of ongoing care from their providers. Did you leave with a clear plan? The truth is, a majority of patients are leaving with more confusion than clarity as it relates to their follow up and management post treatment. In this unique breakout session Andi will facilitate a discussion about the importance of survivorship care planning.
Lively, interactive discussions will cover:
• What is a TS/SCP
• The recommended follow-up care for colorectal cancer survivors
• Responsibilities of different providers (oncologist, primary care, etc.)
• Where to go for resources
Ref: https://5xlhc2qz20k3jc6dy3g31xb4-wpengine.netdna-ssl.com/wp-content/uploads/2017/11/2018-ConC-Breakout-Sessions.pdf
Also, ASCO has a list of recommended questions to ask your doctor as you are transitioning from treatment to follow-up. Click on the Reference link at the very bottom to know more.
.Questions to Ask the Doctor
To learn more about follow-up care for colorectal cancer, consider asking the following questions of your health care team:
What is my risk of recurrence?
What follow-up tests will I need, and how often will I need them?
Who will be coordinating my follow-up care?
If I move or need to switch doctors, how do I make sure to continue my recommended follow-up care schedule?
How often will I need CEA testing? Where will it be done?
How often do I need a CT scan? Where will it be done?
How often do I need a colonoscopy? Who will do it and where will it be done?
How often do I need a rectosigmoidoscopy (rectal cancer only)?
What signs and symptoms should I watch for?
What type of follow-up care do I need beyond five years after treatment?
Where can I find more information about follow-up care?
Ref: https://www.journeyforward.org/follow-care-colorectal-cancer
NHMike wrote:Neuropathy peaked yesterday.
The other symptoms picked up a bit. This is really late to realize it but I think that the steroids help to suppress some of the other symptoms besides the nausea. Cold sensitivity hit me today (it was in the 40s and overcast). I wore my gloves, winter coat, three shirts and Balaclava to grocery shopping this morning.
While shopping, I had my eye on a bottle of wine that I like, some discounted cold desserts, and raspberry swirl ice cream. Can't eat any of it for at least a week and I'm waiting for a month after the reversal before drinking alcohol.
One thought just struck me: will I have to give myself another month of blood-thinner shots? My knees are already pincushions.
Caat55 wrote:NHMike wrote:Neuropathy peaked yesterday.
The other symptoms picked up a bit. This is really late to realize it but I think that the steroids help to suppress some of the other symptoms besides the nausea. Cold sensitivity hit me today (it was in the 40s and overcast). I wore my gloves, winter coat, three shirts and Balaclava to grocery shopping this morning.
While shopping, I had my eye on a bottle of wine that I like, some discounted cold desserts, and raspberry swirl ice cream. Can't eat any of it for at least a week and I'm waiting for a month after the reversal before drinking alcohol.
One thought just struck me: will I have to give myself another month of blood-thinner shots? My knees are already pincushions.
My oncologist and I discussed the reversal last week. My last round ends the end of June. He suggested I hold off on the reversal until at least September, pharmacist from insurance recommended something similar. Both said to give the chemo time to full get out of system, allow body some recovery time before taking on yet another challenge. He suggested an email to surgeon apprising him of where I am in the process, see what needs to be done from his prospective,
Susan
NHMike wrote: . . . I'm disappointed as I'm rather in a hurry to get rid of the bag and port. This would put surgery somewhere around October. . .
Lee wrote:NHMike wrote: . . . I'm disappointed as I'm rather in a hurry to get rid of the bag and port. This would put surgery somewhere around October. . .
I can understand the stoma, butt are they going to take both the bag and the port out at the same time? This was a long time ago (14 yrs ago), butt i had to wait 2 yrs to get my port out. This type of surgery results in scar tissue. If (and God forbid) your cancer does come back, putting a port back in the same location could be a problem. There have been a few people on this board who had this problem and ended up having the port put in on the other side.
I though most doctor would hold off a year or two. Again this was a while ago and lot could have changed.
Good luck,
Lee
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