Do you have already known things you can’t DO -or- things you wonder about (like getting your teeth cleaned) while undergoing treatment for CLL?
I have a resource for yes or no answers to as many as we come up with ... and then I will post -if there is interest. ... and GO!
Perhaps worth clarifying ~
(a) what 'not to do' when receiving chemotherapy; and
(b) what 'not to do' when receiving the novel-agents.
Caven
Does anyone still receive chemotherapy in the traditional sense?
Even the targeted therapies cause neutropenia and risk for infection - right?
But, your point is very well taken.
With few exceptions, outside of the USA, first line (initial) treatment is chemotherapy (or more correctly chemoimmunotherapy). The gold standard is FCR for 'young' fit patients and BR or chlorambucil for older, or less fit patients.
Neil
Good to know - I am doing Imbruvica and Obinutuzumab with or without Ventoclax as first line treatment in US so I thought it was moving in that direction faster. Thank you for info
As posted by Dr. Yousuf Zafar after ASCO '19, on June 2:
“In other words ... Cancer injustice is not:
A science problem, a technology problem, or a genetics problem.
It’s a policy problem”
That would be great!!
2 to add to list:
No dental work during IV chemo.
No probiotics during IV chemo.
Not sure about daily pills.
This is a really good post, thank you...
I have a list of questions for my doctor next wednesday when i pick up my first Ibrutinib pills and start treatment re Flair.
I have had toothache on and off for a few weeks but my next check up is in July.
Can i have any dental work done while on Ibrutinib........
Can i take painkillers for aches and pains while on Ibrutinib
If i scratch myself can i apply an antiseptic cream.
what about insect bites.....
etc etc.
Anne
Anne,
I was told to get a problem crown dealt with pre Ibrutinib, but I crossed my fingers 🤞and luckily it seems to have cleared up ! When I was first diagnosed many years ago the practice manager recommended hand scaling rather than water. I didnt think to question why .Any deep work I take a 3gram Amoxicillin powder an hour before. NHS have stopped prescribing so I get a private one from my dentist.
My GP is well versed now with checking Ibrutinib contra’s and there are many ! Also I often double check with my specialist nurse.
Lastly I wrote a list of all the various prescriptions I had over the previous years for insect bites, sinus etc and checked with my Consultant.
You seem well organised.
Colette
Hi, its taken 4 weeks to get my hepititis blood test ok. I had a false positive. All my immunaglobulin samples for 2 years had to be checked by experts to check for hep b and c. Im having a skin cancer taken off my neck on Wednesday and at last can start the Ibrutinib when thats done.
My question is about Omega 3. I know I cant have flax seeds and fish oil. Do I avoid smoked mackeral and chia seeds. Salmon?
Were you given antibiotics when you started treatment. I have co- Trimoxazole. I will start these on Mon and then Wed and Fri. These will proberbly have side effects. Anne
Anne,
I used to take Omega 3 mainly for a painful knee, but the Ibrutinib leaflet says to avoid. As far as I know natural sources via food are ok.
No antibiotics given to me with the Ibrutinib.
My Consultant thinks my itchy back is due to the co-trimoxazole so this week have stopped to see if it makes a difference. I hope you avoid any side effects.
Colette
While on Watch and Wait
What to do?
Hip Replacement while on treatment??
Do I go on a trial or not
What to do? a very enlarged spleen & very little money for treatment
