I guys ,can you tell me your experience with the chemo ? I think the standard is 6 doses ,one each 3 weeks ,how long does it take ?,is it an injection? Anyone could do normal work during that period? Everything you can help me understand I will be appreciated, thanks.
Hi There
The actual infusion takes a couple of hours each time.
Make sure you dont drive to the hospital as Docetaxel contains alcohol which will affect your blood alcohol level and you dont want to get pulled over and lose your licence for drink driving when you haven't had a drink
The treatments are usually every 3 weeks, you will need to have a blood test before each treatment so they can check your red and white blood cells are at the correct level, otherwise they may postpone a treatment
You can work between treatments but it depends what you do.
I'm a software developer so my job is thinking, typing and clicking a mouse whilst sitting on my backside. There were some days I couldn't manage that
if you do a physical job then I wouldn't recommend it
You usually feel bad the week after treatment and gradually improve until it's time for the next one.
Hello Murcao
We have two Community members undergoing Chemotherapy who are writing a blog of that part of their journey. Here are the two links for you:-
Grant’s prostrate cancer Chemo blog
community.macmillan.org.uk/.../prostate-cancer-recurrence-triple-therapy
I hope this helps.
Best wishes - Brian
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
Hi Murcao . Slartibartfast has given you an excellent summary. My husband had the 6 cycles last year and his comment at the end was that it wasn't as bad as he thought it was going to be even though he did get the range of side effects from loss of all body hair except for a Mohican, drop in white and red bloods which needed help via injections, fatigue to the point where he was totally washed out for a few days each cycle, bone and muscle pain, metallic taste and inability to eat or drink certain things. Some men on the site sailed through with very few side effects. We kept a diary and found that each cycle followed the same pattern for him so were able to plan round good days and let him rest on bad. There are things which can be done for most of the side effects and preventative medicine is given up front to minimise this. As the chemo affects both good and bad fast multiplying cells then cold therapy like a cold cap for the hair, sucking ice cubes during the infusion plus for 30 minutes after it has finished and having a cold water bottle for the extremities can minimise the chemo effects in this area. My husband only experienced a slight queasiness but found that eating little and often helped. On 2 occasions my husband came out of the session as p****D as a newt so definitely don't drive. You also have to take extra care because you will be more susceptible to infection so we took COVID like precautions, face masks in crowded places, avoided people with bugs and plenty of hand washing. You excrete the drug out of every orifice for 2/3 days after each infusion so use a separate loo if you can and double flush, mop up any body fluids with paper towels and double flush, use a condom if you have sex to protect your partner and avoid kissing, wash clothes towels and bedding separately from those of the rest of the household.
Timewise it took anywhere between 2 and 4 hours for each infusion which is given via a catheter in the back of the hand, wrist or further up the arm. These were inserted at each session but it is important to let the staff know if you feel any pain as this can result in damage to the veins. A permanent entry point can be inserted but is not usually offered unless you start getting problems.
I still don't know if I'm going to have chemo ,the urologist and oncologist meeting was before mine completed exams ,I had 10 suspicious pelvic lymph nodes, then come out to be five ,and the bone scan was also not done at the time of the meeting, so the chemo was an hypothetical thing in case of how many lymph nodes came out positive and in case of some bone issues, since the standard here in the netherlands for cure pursuit is 4 max lymph nodes on the pelvis, since I have just one more I hope I won't have to go on chemo, but asking just in case ,talk to the oncologist about pros and cons of chemo in my situation and have the feedback from other brothers here to help in decision, thanks a lot for your time .
I don't see myself better than anyone here ,not at all, that's why I look up for your advise and experience, I just hope ,and for what a read and check with videos from Dr Mark scholz in YouTube, I don't see anywhere saying the need for a chemo on my actual situation, the standard here in the netherlands is ,till 4 lymph nodes radiation and hormone therapy, wich I started one week ago ,I'm I completely wrong or for my point of view, since nothing else beyond 5 lymph nodes, I really didn't want the chemo with all the negative events that may come ,what is your opinion ? Is my understanding correct or I'm behing unrealistic?
Hi !
Have you had your meeting with a ONCOLOGIST yet and have they said that they will not radiate you with EBRT and WPRT together with ADT long term? I mean, before you even have had a discussion with the ONCOLOGISTs (the experts) actually doing these kind of treatments you don’t have the actual facts what they do and don’t and ’Dr Google’ is not always the correct source of information and can stress you more then necessary
Anyway, Docetaxel is mostly used in prostate cancer with metasteses and if you’re a T2cN1M0 you have lymph node involvement and not mets. The STAMPEDE trial tested the addition of Docetaxel to ADT for high risk M+ and the combo gave better results but for N1M0 it didn’t show any evidence of giving better results.
Anyway, IF the ONCOLOGISTs in the Netherlands do WPRT (Whole Pelvic Radiation Therapy) they radiate All regional pelvic lymph nodes. WPRT is a standard that most countries use for lymph node involvement
Hi !
I still feel you should ask the ONCOLOGISTs if they consider doing a WPRT (Whole Pelvic Radiation Therapy) on you together with radiation to prostate. WPRT comes in different modalities and is connected to the overall radiation modality they use.
When I had my EBRT in Finland they used Hypofractionated VMAT RapidArc IMRT with WPRT. Then my radiation was the following:
20 fractions x 2.8 GY to prostate and seminal vesicles
20 fractions x 2.2 GY WPRT
20 fractions x 3 GY to the affected lymph nodes (extra boost)
There are several good people here that can describe how the WPRT was done for them because you can use different types of EBRT when treating N1.
Hi Murcao . You are right to assess all of the options but there is limited evidence that chemotherapy has a benefit when treating node positive patients without metastases. Some form of radiotherapy along with the ADT and possibly a second generation antiandrogen may be offered as this is a combination for higher risk patients. EBRT to the whole of the pelvic area would seem to be the optimum solution but another approach taken is to remove the mother ship with radiotherapy to the prostate and then leave the lymph nodes for later. The ADT and 2 nd generation antiandrogens can hold things at bay for a long time. This leaves the option to treat with targeted therapies at a later date in the pelvic region. I was reading recently that adding low dose Brachytherapy to the EBRT is showing positive results for high risk patients. You are getting all your ducks in a row, along with the evidence supplied by others, to have a good discussion with your Oncologist. I don't know what the system is in the Netherlands but our Medical Oncologist sometimes has a different opinion to the Radio oncologist. They talk to each other then each give us their opinion on the pros and cons but ultimately we have the final say in treatment pathway and the Medical oncologist isn't afraid to say that he is wrong. Once you have your full diagnosis and have met with the oncologist then I would see if you can speak to the radio oncologist. You will need to do your research on which facility has the best machines but also the experience of the radio oncologist on doing this kind of procedure. Unless you have access to a specialist prostate cancer expert who is up to date on all the latest work it is difficult for a medical oncologist to keep abreast of all the options for all the types of cancer they have to deal with. I often update our medical oncologist on some of the latest papers and this has allowed us to develop a strategy for treating my husband both now and in the future if necessary.
Hi
Alwayshope, you’re really amazing to provide the most powerful and clear information and I agree that Murcao have lots of material to take with him in the dialog with onco moving forward.
Murcao, you as a EU citizen have the possibility to have treatments in other countries (I’m thinking public healthcare first of all). You might need to engage yourself more because I don’t know how much help you may have from the Netherlands. But remember that this is also a possibility and I think that Onco in Netherlands knows what the brothers and sisters in other EU countries ’offer’ when looking at different treatments
I tried to read the most lately, seek for opinions, watch Dr mark scholz on YouTube, but many information is very vague or abstract ,for example, in England ,I think, they only consider metastatic disease when it spreads outside the pelvic region, here every positive lymph node they consider a metastasis, they consider only ,local when is all contained within the prostate, limited advanced, when the tumor begins so spread outside the prostate, but as soon as there is one positive lymph node involved that is metastatic disease, different approaches, they consider the limit to curative intent max 4 lymph nodes in the pelvis ,if even one is outside the pelvis or one spot in the bone everything shifts to treatable, I try to read why 4 and not 5 ,maybe is a technical thing about the radiology, they can't give all the necessary power to the area to kill the tumor on the prostate and extra 5 lymph nodes, no idea ,next week I have a meeting with the radio oncologist then I can ask ,you are a very important person on this forum, your knowledge, and specially your always kind words are very important for everyone here ,wish the best for your husband and for you ,thank you and God bless .
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