This group has helped me so much! My fears about chemo still run deep, but I have come to terms that I need to do this and it won’t be as awful as I’m imagining. You’ve all been a HUGE help as I compiled a laundry list of questions to ask the Dr today. And then I took the giant first step and made the call. Heart racing when I left the message. Heart racing waiting all afternoon for a call back. Heart racing because I’m officially on the schedule for Feb 9 & 10. And, lastly, heart still racing because the wheels are in motion.
Questions I asked. Some are minor. Some are major. Some are pertaining to my secondary condition (fractured femur from bone lesions). Hoping this list can help someone else out there.
Can I take something to calm down for treatment, like Lorazepam? I’m certainly going to be freaking out.
- Absolutely. They also offered to give me Ativan in the IV before we start. Yes, please.
What supplements do I need to stop during treatment?
- The only one they want me to stop is turmeric.
What diet limitations will there be during treatment?
- None. I asked about yogurt (I had read on here that the cultures could be a bad thing). No, they said they actually encourage foods like yogurt and they dont have any foods that I need to avoid.
Can I take pain-killers during treatment? (not the day of, but, during the 28 days between treatments)
- Yes, they can be taken… even on the day of treatment.
How long does the Day Two (rituximab) treatment last? I know that Day One (bendamustine) is supposed to run approx 4hrs.
- Approximately 1.75hrs for the first one.
Are there steroids in the meds? I dont tolerate them well.
- Just a bit in the ‘prep’ - Dexamethasone. They will monitor me.
When can we schedule to start treatment?
- Next Wednesday/Thursday - Feb 9/10. Just breathe….
Questions pertaining to my fracture -
What will chemo do to the fracture that is currently trying to re-attach?
- the fracture is trying to reattach to a lesion. Starting chemo and dissolving the lesion is going to actually help the healing process, not hamper it
What kind of chair will I be sitting in for four hours? (I’m super broken with my femur fracture and quite like Goldilocks. Too soft and I cant control a pain spasm. Too hard and it can cause a pain spasm.)
- Recliner, but not very soft. Covered in plastic for easy cleaning. I’ll have to bring bolsters for my leg.
I have a Feb 16 ortho appt. They plan on doing an X-ray. Is that ok to have during treatment?
- Absolutely.
What if the Day One treatment (bendamustine) causes my fractured femur to flare up and I cant make it back for Day Two? Can someone come to the house? [My appointment for my biopsy results last Wed caused so much pain for three days. Getting out of the house (steps) and getting in the car are monumental tasks.]
- No in-home option for treatment. I’ll just have to be very, very careful.
I absolutely need to control vomiting. I cant even cough or sneeze without inflicting a massive pain spike. I cant fathom what vomiting would do.
- They assured me this is rare and that they have excellent meds to control that.
Good morning SeVen and first well done coming to your decision, it is important to be going into this well informed and with no regrets.
You decently grilled your Dr.... well done taking control and getting your questions asked and answered. This is often a challenge if you are nerves and cant fight your corner for information.
I will highlight for those reading your post that you are in the USA so there may be differences in what you have been told as being the normal expectations of how things will go.....compared to what happens in the UK.
The one thing that did catch my eye was.....
What diet limitations will there be during treatment?
- None. I asked about yogurt (I had read on here that the cultures could be a bad thing). No, they said they actually encourage foods like yogurt and they dont have any foods that I need to avoid.
This is totally different from what I have always been told, but again many folks in the UK are never given information about diet as this often slips through the net or is in all the information we get that most just don't look at it all.
So it's all about getting yourself ready for your first treatment. You may find this link on the Lymphoma Action Website helpful - Top tips for the day of your chemotherapy
Onwards and upwards.
Yes, I was wondering about the differences between your process compared to mine. I was hoping some of my questions were more ‘general’ in nature and not specific to US/UK. There are quite a few ‘cancer centers’ in my city, but I prefer a more intimate environment at my doctor’s office. Not sure why those cancer center set-ups give me the heebie jeebies. Rows and rows of recliners and IV bags. Maybe it was because I saw my mom sitting in that sea of sick and nervous faces.
Thank you for the link to the list of supplies! I am definitely a list maker and this will help. I had to laugh at some of them. What the heckin heck are concentrated squash and boiled sweets? LOL! And biscuits and crisps? Biscuits are something you put butter and gravy on and crisps is a verb. Ok Ok. I know I’m the outsider here. I’m not completely unfamiliar with your vernacular and I know those are cookies and chips. But SQUASH? I think I’ll survive for four hours without bringing squash with me.
Also getting other helpful hints from friends - ginger.
Can anyone recommend the best form of Ginger? I think I’ve read it all….boiled root, lozenges, pickled, tea, sprinkles, pills… Has anyone had good luck with a particular form of it? There’s a health food store close by and I’m sure they’ll offer all options. And there’s always Amazon. GAH! The dang Amazon truck driver might as well be my son. I see him every day! LOL Wait. Tell me that y’all have Amazon?!
OK, I dont actually say y’all. That’s a Texas thing. We visited some friends in Texas a few years ago and they said, “Y’all be sayin’ y’all before y’all go home.” No. It didn’t stick, even though I do type it jokingly. In MY neck of the woods, we say ‘you guys’. So it would look like this “You guys will be saying you guys before you guys go home”
Two Nations with the same language separated by the same language
Squash....... a sweet concentrated liquid made from or flavoured with fruit juice which is diluted to make a drink.
Boiled Sweets...... a small, hard piece of candy with a sweet and usually fruity flavour.
Biscuits....... a small flat dry sweet or plain cake of many varieties, baked from a dough.
Crisps........ very thin slices of fried potato that are eaten cold as a snack
We have had lots of students from Springfield Missouri come stay with us at the end of their academic year and it was fun to see them try to get the hang of terms like pants, boot, bonnet, pavement.......
THIS may well explain this
So squash is not the icky vegetable, it’s a verb. LOL! Got it.
That video. OMGosh! I am so inundated every day with internet stuffs that I rarely laugh out loud anymore. That clip? I sat here laughing out loud! Well-played, Sir!
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