We're writing this story to share our experiences with prostate cancer, the treatments, the ups and the downs. My name is Cris and I'm the son and direct caretaker of my dad of Paul-Jan. The first post will be a bit more of a timeline and later on I'll gladly share more of our experiences from time to time.
Feel free to contact me at firstname.lastname@example.org with any suggestion or questions. I'm open and willing to exchange thoughts and experiences that we've done up with this terrible disease.
In 2010 my dad has had a mandatory PSA check, it was slightly raised but not reason for concern yet.
During 2015 and start of 2016 my dad started to notice some problems with urinating. As he was the direct caretaker of other terminal family members he choose not to have it diagnosed directly. After his mother (my grandmother) passed away he decided to have it investigated.
So in the spring of 2016 he went for further testing, starting with a basic PSA test.
14th of March 2016: found out that the PSA level had further been raised to 26 prompting a biopsy of the prostate.
21st of March 2016: a total over 10 biopts were taken from the prostate, a procedure which he experienced as very painful.
30th of March 2016: the results came back and turned out that nearly all biopts were positive for prostate cancer.
4th of April 2016: x-rays and bone scans were done (no spreading to the bones were found).
2nd of May 2016: MRI was done (prostate is nearly fully 'cancered'), hard to tell wether there is spread to lymph nodes. A multi-specialist team for several hospitals took a look at it and judged there was some spreading to the lymph nodes but not much.
13th of May 2016: Given that the prostate cancer had already started to spread a operation of the prostate was ruled out. During the conversation we've briefly touched the subject of doing a hormone therapy and chemo straight away to aggressively battle the cancer from the start. The uroligist had head of this but dismissed it as option. Saying the hormone treatment (either via injections or orchiectomy sufficed in by far the most cases). As my father didn't want the hassle of the injections every so many months he choose to do the orchiectomy.
No bone metastases
Note: we were not informed of the Gleason score.
21st of June 2016: orchiectomy time, my dad has had many operation in his life and always seems to have problems with local anesthetics. This was indicated prior to the orchiectomy and narcosis was requested but dismissed. During the operation, despite local anesthetics my dad felt everything that was being done. The maximum level of local anesthetics was already given to no avail, when they ultimately decided to use the narcosis.
Juli - August 2016: As result of the orchiectomy. Hell! Heat flashes all over the place more then 25 heavy heat flashes a day. Very very exhausting. Initially no loss of hair or libido.
18th of August 2016: Blood test for PSA values
23th of August 2016: PSA levels have not risen yet
October - November 2016: Lower back pains, radiating to the right leg. Having difficulties to walk without pain.
3rd of November 2016: Blood test for PSA values
7th of November 2016: MRI / bone scan
24th of November 2016: Results of PSA and bone scan. Note that this talk about the results of the PSA and MRI was delayed with one and half weeks because of the holiday of the treating urologist. PSA level However MRI and (local) Bone scan show bone metastases (in the hip) and progression of the cancer in lymph nodes.
1st of December 2016: Total body / bone scan
6th of December 2016: Bad news, oncologist shows that there are bone metastases throughout the spin, in the hips, to many to count. The pain in the lower back and right leg are explained by a large tumor growing inwards at L5. However as the PSA levels are low / non existant they are unsure as to what type of cancer it is. They will need extra biopts to determine what it is.
Medicines are given to deal with the pain and the swelling of the L5 tumor:
- 1x day Dexamethason (4mg)
- 8x day Paracetamol
- 2x day oxycodon 10mg
- up to 6x day oxycodon 5 mg
This greatly helps the quality of life. The pains were intensifying from October up to this point and were almost unbearable. The medications above allow my father to continue his normal life routine.
9th of December 2016: CT scan in order to correctly take the biopsy. Tumor at L5 is chosen as target for the biopt. We've been asked if it's ok to take extra biopsies for a research program (I'll link it later). My dad agrees to it as long as the pain is bearable. Also agree not to go on holiday in December. We had planned (one final) trip to Prague but it was advised not to do it as the L5 tumor could cause accute problems.
13th of December 2016: Biopt time, at the moment they change from L5 to the lymph nodes (retroperitoneal) as it's less painful. Extra biopsies are taken for the research program.
29th of December 2016: Results are in. PSA-negative. Not small celled. Still classified as postrate cancer. It's decided that there will be a 'one-off' palliative radiation therapy on L5 and afterwards a chemo therapy (Docetaxel)
2nd of January 2017: Intake with the radiotherapy doctor, very friendly very open. First doctor that didn't feel rushed, first one to take the time to sit and really speak about what pains my dad had and how he could help it. Also made it very easy by saying "I will call afterwards you to check how it went and how you are going on" little things like this are sometimes a big blessing.
3rd of January 2017: Scan in a different hospital as they specialise in scanning.
4th of January 2017: one-off' palliative radiation therapy on L5, easy and quick. A bit of a burning feeling on that spot, but other then that, no complaints.
12th of January 2017: Chemo / docetaxel + prednisone. However due to the use of Dexamethason no further prednisone is given. This is a treatment scheduled to go once every 3 weeks for a maximum of 6 times. 24 hours prior to the treatment you get a couple extra dose of dexamethason and extra bone reinforcement medicines are also given. The treatment itself is not a big deal, sit still for 1.5 hours using a drip (infusion).
13th of January 2017: Loads of energy hyped because of the massive amounts of dexamethason still in the blood
14th of January 2017: Wakes up at 09:30 am with pains and aches everywhere. Normal medicine schedule dicates an intake of - 1x day Dexamethason 2x day Paracetamol and 1x day oxycodon 10mg at 08:00. At 10:30 I check on him and he has a fever of 39.4 Celsius.
After contact with the hospital we rushed into the emergency services. Everything was checked, temperature was already dropping, blood, lungs, urine, heart rate, etc. were checked and turned out to be 'ok'. Were given a general antibiotic to deal with a possible viral infection (which could explain the fever, although no source of viral infection could be identified).
17th of January 2017: Still having really bad nights with a lot of aches and pains despite the medicines. Energy starts to recover a bit during the day, slightly hopeful.
19th of January 2017: Slightly improving the night rest and the energy during the day. Did have a strange cramp during the night near the ribs on the right side.
20th - 26th of January 2017: A bit more hopeful, some days are better then others but in general the energy levels seem to recover a bit to the level op pre-chemo.
27th - 29th of January 2017: Hell! Diarrhea and massively so. Was using laxating medicine to counter the other medications side effects, stopped this immediately but didn't help. After nearly 48 hours with 10+ visits to the toilet he was feeling really fatigued. No fever though. So decided to ring up the hospital. They prescribed Loperamide to get the diarrhea under control.
1st of February 2017: Diarrhea just under control since today. Had blood checked prior to the 2nd chemo session of tomorrow. The oncologist suspects a viral infection might have caused both the fever and the diarrhea but is unsure. Blood values are good enough to continue with the treatment although give the number of complaints he asks whether or not my dad wants to continue down this road. As there really is no alternative and he doesn't want to give up on life just yet we decide to continue with the chemo as planned.
2nd of February 2017: Had a 'good night', which is a couple of hours of sleep in my dad's case. He lost a lot of fluids during over night, perhaps has to do with extra doses of dexamethasone required pre-chemo. Going for the second round of chemo today hoping the second round will go better then the first.
2nd of February 2017: Had the second round of chemo (docetaxel). Had difficulties placing the drip (infusion). Hands were very dry and veins hard to find. Hospital also messed up the medication (again) normally this docetaxel treatment is taken in combination with prednisone. However since my father is on the more powerful dexamethasone (4 mg daily), the prednisone wouldn't be needed according the oncologist. The hospital keeps mixing this up and keeps on bringing the prednisone despite having mentioned it several times to them.
Apart from that, the drip infusion went ok without further allergic reactions. Now back home in the hope there won't be any extreme side effects in the coming three weeks.
5th and 6th of February 2017: Had some difficulties on the evening of the 5th eating a normal dinner, loss of taste plays a part but also generally not much desire to eat a full meal. Trying to keep up by eating every couple of hours. Fruit and bullion are good but most other things taste bland.
The 6th started out very poorly. An unplanned visit to the toilet due to intestinal challenges at 3 AM initially was of little concern. However following that diarrhea made its return causing a long night with little or no time to really rest. Trying to get it under control with Loperamide, hoping that it will do the trick.
7th of February 2017: Diarrhea has continued throughout the day. We're now at nearly 40 hours of unscheduled visits, loss of fluids and overall nastiness. The loperamide (up to 8 piece per 24 hours) doesn't seem to help much. Trying to hydrate as good as possible although it's not easy to do so. Taste is gone and even the once 'fresh' water is an obstacle to ingest.
Called the hospital, as was instructed with continuing diarrhea. The oncologist suspects an (over)sensitivity of the mucous membrane in my intestines. However since there's no fever or vomiting yet there is little they can do other then to warn for dehydration. And for the Docetaxel round #3 they'll adjust the doses of the chemo.
For now, trying to battle through it although it's costing a lot of energy. Hoping that the intestines will calm down soon.
Research and hope:
We've been told that my dad's case is unusual. Although the initial diagnoses is not unusual:
No bone metastases
What followed isn't witnesses in many cases from what we can tell. Following orchiectomy in late June the PSA dropped, so much so that it's now undetectable. It's not small called but the cancer very rapidly spread into many bone-mets (spine, pelvis, ribs), diagnosed beginning of December.
Because of this and to help possible future patients we were offered and decided to assist in the CPCT-02 research. CPCT stands for Center for Personalised Cancer Treatment.
The growth of a cancerous tumor is very complex significant changes occur in the tumor's genetic material (DNA) over time in patients with cancer. While these mutations in the DNA make the tumor increasingly aggressive, they also help us distinguish who will and will not benefit from a given treatment. At a later stage we may even be able to develop a treatment specifically focused on the mutations in the DNA of the tumor. The goal of the CPCT-02 study is to look at the DNA profile of the tumor and study the link between the DNA profile and responses to therapy.
Patients with advanced or metastasized cancer who will be receiving a standard treatment with anti-cancer medication.
Patients eligible for this study are those with advanced or metastasized cancer who will be receiving a standard treatment with anti-cancer medication. We will take a segment (biopsy) of the tumor before and during treatment. Thanks to a new technology (Next Generation DNA Sequencing) we can now simultaneously identify all major mutations in the DNA of the tumor (the profile). Precisely because the tumor is constantly changing it is important to have insight into the mutations in the DNA before the treatment starts. Moreover, we want to find indications in the DNA as to whether someone does or does not respond well during treatment and after the treatment has finished.
Because this is a new method it is not possible to guarantee that the patients will have a proven effective treatment at a later stage. Once the patient's DNA profile is known, however, we can and will do our utmost to involve the patients in pharmaceutical research that suits their DNA profile.
For more information about possible participation, contact your own oncologist or an oncologist in one of the participating centers. You can also contact Neeltje Steeghs, internist oncologist at the Antoni van Leeuwenhoek hospital and principal researcher on the study.
For anyone interested please also look at their website: http://www.cpct.nl/en/cpct-02/
The chances of winning a lottery are higher than the chance that this will benefit my father directly. But we sincerely hope that the biopts taken from my dad will prove to have contributed to the survival of other patients.
So if you can support this or similar research, please do so. It's vital to the survival of so many patients!
8th of February 2017: The diarrhea is still far from over however there is more 'rhythm' to it. Also some of the energy levels are slowly regaining. Comparing it to a battery we're starting to recharge and we're at 25%.
A lesson that we've learned first hand, is that once you sit or lie down continuesly, your body starts to shut down. You always want to use the energy that you do have, even if it's not much. So despite the low energy levels and the diarrhea, today was a day where we said; "Carpe diem. Seize the day"!
With good will and the little bit of energy that was there we went out to dinner, by bicycle, to one of our favorite restaurants. This is an activity which we love to do. Although there's still loss of taste and distorted taste, some things are tasting very well. Also, just getting out there, cycling, talking one-on-one with eachother in a different environment is a lovely thing to do. And in a sense, even though it costs quite a bit of energy, it's moments like this that give the (mental) energy to continue with the treatments.
Hoping we have many more of these moments.
12th of February: Finally some normal consistency to the defecation. Although the intestines are still acting not 'calm'. Decided to take (hopefully the last) Loperamide to keep it under control. Don't want to take to many Loperamide, as the other way around as a congestion would also be bad.
The doctor who preformed the 'one-off' palliative radiation therapy on L5 called earlier in the week. Sadly we had to report that there is little pain relief in the lower back area and there are some new area's of concern, specifically on the top of the spine near the neck. The doctor was kind and friendly and told us that we'd probably have another look at palliative radiation therapy after the chemo sessions are done. This plan heavily depends on what the situation and outlook is at that time of course.
So with the start of the new week around the corner, we're hoping that the energy (and blood) levels will come back and we'll be ready again for round #3 of Docetaxel on the 23rd of February.
20th of February 2017: So it's been a couple of days since the last update. The reason is that thing have started to stabalise a bit. The intestines are functioning almost as normal, save for some blood loss.
Downside is that there is still considerable amount of back pain and it seems to not get any better. The feeling in the right leg gets less and less and as a result the rest of the body is compensating to walk straight, causing the back to freeze up tight. Also new complaints are swollen ankles and bleeding nose every now and then.
Positive note however is that the energy has somewhat returned. So we're trying to maximize the enjoyment that we're getting in these days by taking a short walk, cycling somewhat and doing fun things together. Although time is short, one good day can feel like a thousand years.
On the 23rd, if all goes well, we're up to for chemo round #3. Because of the diarrhea issues following #2 the oncologist will be altering the dosage of #3 in the hope that will help.
22nd of February 2017: Pre-chemo visit; this is the moment where they check if the values in your blood have recovered enough to continue. After chemo #2 my father was plagued by intestinal challenges (diarrhea and bleeding) for nearly two weeks and has only just recovered in time for chemo #3. So the oncologist was wondering whether or not to postpone the chemo #3. However to keep the rythm we decided to move forward for chemo #3, this time however with 75% of the Docetaxel (Taxatore).
It's still unclear whether or not the treatment has any effect. Symptoms such as (back) pain are still present despite the chemo and the 'one-off' palliative radiotion therapy on L5. Bone mets are hard to meassure, as even with a succesful treatment the bones will be kind of a swiss cheese. Lymph nodes are much easier to meassure though, so it's decide to do a CT scan on 13th of March, just prior to chemo #4, to see if the cancer in the lymph nodes has grown or not.
Because the pains are prevailing, the question also popped in our minds whether or not the oxycodone was working well enough. So after doing some research we've read that dexamethasone can interact with oxycodone. "Dexamethasone may reduce the blood levels of oxyCODONE, which may make the medication less effective in treating your pain." source: https://www.drugs.com/drug-interactions/dexamethasone-with-oxycontin-810-0-1770-2012.html
Naturally we've raised this question with our oncologist, and asked whether or not we should switch to prednisone. After discussing pro's and con's and possible effects it's decided to halve the daily dexamethasone intake. This differs from the standard Docetaxel (Taxatore) treatment, but we place trust in our oncologist.
23rd of February 2017: Chemo #3. Pains in lower back increased, perhaps due to the intake of the (required) 6 dexamethasone prior to the chemo affecting the oxycodone ? In any case, we go for it.
Sadly, despite having a different regime (dexamethasone daily vs prednisone daily) we were again supplied with prednison. This has been indicated more than three (3) times now to various people but the system apparently has difficulty doing 'custom' medicine regimes. This is worrysome also because this is how medicines get lost (off the grid) plus little things like this burden the healthcare system costs in the end as well. Very frustrating.
As reported earlier there where quite some diarrhea issues. For this we had Loperamide prescribed. However our standard package of medicine also cotained Metoclopramide that works agains nausea. Now it turns out, both things do exactly the opposite:
- Metoclopramide stimulates the movement of the stomach and intestines. It makes food more quickly from the stomach goes to the intestine.
- Loperamide inhibits bowel movements. It also attracts the anus, making you feel less crowded.
So using them in combination, not a smart thing to do. We've explained this to the nurses that are handling care during the chemo. But they did not seems to grasp the issue at first. After some heated discussion we finally got through and they prescribed different medicines to battle any nausea.
- Always read up on the mechanism of the medicines that you're using.
- Always compare all your medicines online for any drug interactions https://www.drugs.com/ is a great site for that.
- Always consult your findings with an expert before you change anything. Because what you find online may not be true or you might draw the wrong conclusions from the information.
24th of February 2017 - 5th of March:
Recovery from chemo #3, a lot of tiredness. Luckily, probably due to the adjusted dose of chemo (75%), we've experienced no diarrhea this time around. Nevertheless things like tiredness, hair loss, dry skin, loss of taste, and swollen ankles remain.
5th of March - 12th of March:
The 'good week', still have to spend energy carefully, but it feels like a thick fog around the head has disappeared. What we've noticed so far that the initial day after chemo usually is OK'ish, then it becomes really tough, comparable to how empty you can feel after a heavy flu, this lasts until day 7-10 after the chemo. Then there's a week or so to get the energy back and then the final week is what we call 'the good week', where's there's slowly some time to do stuff.
All in all the energy levels are declining and the pain in the back is increasing. So it seems the one-off radio therapy of L5 (in the spine) hasn't helped to much. Also the lungs seem to get worse, perhaps due to the medicines, it's hard to say. My dad has COPD and Apnea as well. However what is certain is that the impared breathing is causing the energy levels to be even lower.
13th of March:
CT scan, this time of the lymph nodes in the core of the body and the lungs. The aim is to measure whether or not the chemo is having any effect. The prostate cancer my dad has gives of no PSA, so it's not possible to measure it this way and lymph nodes are easier to measure then bone mets. We hope for a positive result. Results will be in tomorrow.
15th of March: Bad news, the CT scan has concluded that the chemotherapy (Docetaxel + Dexamethasone) has not halted the cancers progression. A few lymph nodes have shrunk, but the majority has grown. Also there are more bone-mets visible.
Conlusion: We'll stop with the chemotherapy as per direct.
So what now ? Normally we'd be at a point where you can't be treated anymore.
Radium-223 would be an option, but the Dutch healthcare system doesn't allow for this treatment after the cancer has spread to other parts of the body. In my dad's case, the lymph nodes. Reason? It's freaking expensive because of patents. (more then EUR 30,000,-). If you ask me, pure commercial exploitation by the pharma companies behind it.
Radio treatment can't be used in combination with chemo. However since my dad has now stopped with chemo we can do radio treatment again. So that will start on the 22nd of March. The aim of to relieve the pain, and prevent immobility. The tumor in L5 is giving concerns. Pain is increasing and the mobility is decreasing. Again we'll do a one-off radiation in the hopes that it will help a bit.
And then what? Wait for death? No, luckily our great oncologist has suggested we participate in a study. Study is called "ReCab 2". 50% of the patients with get cabazitaxel (a different Taxatore) and 50% of the patients will get cabazitaxel + Rhenium-188-HEDP. Rhenium-188-HEDP is comparable to Radium-223, however not patented (exploited for commercial use). In comparison this costs only a few hundred euro's.
So we stay hopeful, we hope to limit pain and complications and we hope that we'll make it through the ReCab 2 study. Obviously because we love life and want to enjoy as much of it as possible. But also to help future patients by analysing data and sharing experiences.. We are also still participating in the CPCT 02 study as mentioned before.
Thanks for all the support and responses we've been getting from the community. It's heartwarming.
Small correction, I mentioned earlier "cabazitaxel (a different Taxatore)" which is not entirely correct.
- Docetaxel tradename = Taxotere
- Cabazitaxel tradename =Jevtana
Docetaxel, sold under the brand name Taxotere. Docetaxel is in the taxane family of medications. It works by disrupting the normal function of microtubules and thereby stopping cell division.
Cabazitaxel (previously XRP-6258, trade name Jevtana) is a semi-synthetic derivative of a natural taxoid. It is a microtubule inhibitor.
22nd of March: Barely slept due to increased pain in the back. Had to go to Arnhem for a pre-radiotherapy scan.
23rd of March: Radio treatment, having challenged walking. Less feeling in the leg. More pain in the back. Radio treatment was relatively quick procedure.
24th of March: After another bad night and increased pain, called to the hospital (daycare), sadly our regular oncologist wasn't in. However a secondary doctor allowed for increased medication. As of this day we're on a daily schedule of:
- 1x Dexamethasone
- 2x Slow-acting Oxycodon 20mg
- 6x (upto) rapid-acting Oxycodon 10mg
- 8x paracetamol
Just to deal with the pain. Sadly, the pains in the back remain.
Had a meeting in the hospital today and we'll be able to start cabazitaxel + possibly the Rhenium-188-HEDP treatment on the 30th of March. I say possibly the Rhenium-188-HEDP as that will be by luck of draw due to the "ReCab 2" study.
25th & 26th of March: Very difficult weekend. Feel twice, one time outside stumbled over a rock. One time inside the house when the back 'gave out' and fell behind. This is a very scary feeling. The pain doesn't go away much, especially at nights laying down it's hard. Walking is also hard but sitting in the right position is 'ok'.
On the positive side, despite everything we had a wonderful day at our local pancake house with all three sons, grandchildren and daughter in laws. Took a lot of effort to get there and back, but was worth all the suffering.
Still hoping that the back pain will become less in the coming days. Will take full rest not to strain anything at this moment.
27th of March: Sat down and re-evaluated the situation. The pain is worsening, the mobility is worsening and the overall condition is deteriorating fast. Based on this we've chosen to stop with all treatment. It would irresponsible and above all unbearable to continue.
We'll now contemplate what to do in the final phase and judge for how long it's doable to stay at home. But above all we try to live in the moment, not focusing on the past, not eyeball the future to much but try to enjoy the moment of the day. And doing that, still gives enjoyment each day, no matter how hard the situation is.
28th - 31st of March: Very tough, very emotional days. The pain in the back is to much to move about for more then 10 minutes. It's hardly undoable to walk up a stairs. Also because my dad has fallen twice in the weekend of the 25th, we don't want to take anymore risks in-house. So after a visit from the doctor my dad has relocated to a nearby Hospice on the 31st.
31st March - 7th of April: First week in the Hospice and we're so happy that we've made this step. This particular hospice is small scaled, very warm home feeling and run by an amazing team of 50+ people, mostly volunteers. For me as son, the weight of being responsible for the care is lifted, which means I can now concentrate on being a son and the best friend of my dad.
You can really noticed that the volunteers and medical experts in the hospice have dealt with many patients before, so they're really smart about making things as comfortable as possible for my father. But also assisted in adjusting the medication plan to better suit the personal circumstances of my father. The daily dose of 2x Slow-acting Oxycodon 20mg has now been upped to 40 mg twice a day. This really helped reduce the pains that my dad was experiencing, in particular in the morning. The hospice is focused on adding quality of life in the final phase and so far are doing an amazing job of it. We both do our best to enjoy every day, not trying to look into the future too much and not think about the past too much. Really live the day that you're living today.
7th of April - 28th of April: It's been a while since our last update. First of all thanks to all the heart warming responses from the YANANOW community, it's really nice to see so many read these stories and find use in them for the own lives tales.
My dad is currently still in hospice care. Which is excellent, I'm so happy we took the step as soon as possible to move to the hospice. We consider ourselves to be in overtime and are trying to make the best of it. Luckily my dad has really found his day to day routine and thus is able to enjoy every day that he is given extra. In our case we've decided to keep visits limited to a close group of inner circle (close family and friends), which works out fine. The energy is low in morning and evening but there's room for one visit a day or so.
We're also working with the doctors to get euthanasia paperwork done. For in case something happens which causes a situation we no longer wish to be in, my dad can exit gracefully. Luckily in the Netherlands this is possible, although it's bound to a lot of rules and regulations. Palliative sedation is also an option that we're strongly keeping in the backs of our minds. If you're a patient or know a patient and you're reading this and you should have any questions about this feel free to email me.
But overall the people at the hospice are great and the medical care is really doing a good job keeping his pains limited.
On that subject, medication has been adjusted a few times now. So for instance the 2x Slow-acting Oxycodon daily has been raised several times. Just prior to the hospice on the 24th of March it went from 10mg to 20mg. And since my dad is in the hospice it has been raised to 2x 30mg / 60mg and now most recently 80mg. The increase of medication does make more drowsy and tired, especially directly after.
We hope sincerely that we're given some more happy moments and that the end will be merciful, without to many bumps and complications. With said I'd like to close of with one special sentence for all that read this. Just know that..... Love does not stop where life ends. Your loved ones can always remain in a special place in your heart. Love life, and remember that one good day can feel like a thousand years.
5th of May 2017: Sadly my father has passed away.
"Love does not stop where life ends. Your loved ones can always remain in a special place in your heart. Love life, and remember that one good day can feel like a thousand years."
Also, should anyone read this story later down the line. Feel free to always contact me about our experiences. I'd be happy to share my insights the email adress email@example.com will remain open for this purpose.