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Just checking in to see how things are and if you got more clarity on your next steps.
Hope all is under control.
Well, my current staging is still undefined, i had a PET scan last Thursday (the actual scan was fine) and i don't know the results yet, i also had a GFR test yesterday (Monday) in preparation for Chemo (currently the 1 hit of Carbo), i have a meeting with my Oncologist on Thursday where i hopefully should find out the results of the PET scan and the GFR test.
I signed off on the Chemo and it's due to start on Wednesday 29th, but i'm guessing this depends on the PET scan results.
It's really annoying that the initial results from the first pathologist report were seriously wrong, especially as the oncologist was also waiting on the second opinion, in future they shouldn't disclose the initial results and say waiting for the second opinion. Anyhow its all done now and its in the past. I actually feel in a weird way lucky to have had a PET scan, even if was slightly radioactive for 6.5 hours...
My last round of bloods given from the 09/01/2020, the results were:
AFP = 2
bHcG = <1
LDH = 330
LDH of 330 - kind of worries me considering the original value before testicle removal was 338, then after testicle removal it went down to 322 now it seems to have gone up...!
How you doing, have you had the chemo?
Hope it goes well at your oncologist meeting. If you go ahead with the chemo, I think you should be fine with the Carboplatin.
I have written up my initial few days' experience on Carboplatin in another thread as there was another group member on it who had undergone 2 cycles (most others I've seen did just 1 cycle), but here is a summary.
My oncologist recommended 2 cycles at AUC 5 dosage for me (I was diagnosed with stage 1 seminoma, and no invasion seen) to lower my risk of recurrence to 1-2%. He explained the big risk of Carboplatin is allergy, but they give you anti-allergy drugs and monitor for reactions. He said the biggest side effect is a drop in platelets/white blood cell count which he said usually is on Days 10-14 (so avoid crowds, get lots of rest). He told me that while individuals do differ in their reaction, he finds that Day 3 is when patients generally feel most fatigued.
I went in last Wednesday for my first cycle of Carboplatin (second cycle is 3 weeks from that date).
It was remarkably straightforward- saw doctor at 9am, went to the oncology day patient ward, got prepped with the drip/fluids, some anti-allergy drugs, then 30 minutes for the actual administering of the carboplatin followed by the drip, out by 11am and back home by 11:30am! It really was not too bad and the first 24-48 hours I felt a bit tired but otherwise OK. However, my hand was quite swollen and bruised from where they injected the drug.
I slept intermittently, 2-4 hours at a stretch only. I was drinking lots of water to flush out kidneys and could not seem to sleep for longer that 4 hours. I mainly listened to podcasts (too tired to read or watch TV, but did manage to do a bit of work on the laptop and to alleviate boredom). I could eat meals normally and did not feel too nauseous.
On Day 3, as the oncologist warned, I felt really tired and very nauseous and I couldn't eat anything solid. Spent the day in bed, drank lots of fluids. Day 4 and 5 weren't great but I was steadily improving, with the nausea lessening, and I could eat lunch on Day 4 and lunch plus dinner on Day 5. After the weekend, on Day 6, I was feeling more "normal" and did a full day's work on the laptop (from home) but I may have overdone it as the following day, I felt a bit tired again.
This Friday will be Day 10, this is the period that the oncologist warned my immune system would be most vulnerable, so I plan to take it easy over the weekend.
My advice (from having gone through this) would be to relax, take it as it comes (don't eat if you don't feel like it, sleep when you need to, and try not to overdo work).
My Oncologist phoned and said my Chemo has been pushed out to the right and i need to have 1 lymph node removed, i think its called RPLDN, i'll find out tomorrow when i have a meeting with the Oncologist. Then my next appointment on Tuesday will be at the Hospital to discuss with a specialist lymph node removal process, looking forward to this....!
When i was categorised as a stage 1 (incorrectly), i actually read a lot online about Testicular cancer, different stages etc, and thought this RPLDN doesn't sound too good...! Now i'm going to have one, oh well... Its the recovery that worries me, wife doesn't drive and kids rely on me to take them to nursery, school and work, i can sense a slight issue brewing...! Should be fine though, i'm lucky enough to have people around who can help, just needs some planning...
Hope all is going well for you and the chemo doesn't batter you too much, but just enough to get rid of the all the little nasty's inside.
Anyhow i'll keep you updated, they may even change the type of chemo required, hopefully find out my new treatment plan tomorrow.
Sorry to hear about the extra tests but as you say, if the initial diagnosis was incorrect, it’s good that they’re making sure before further treatment.
Hang in there,
So I had a R-Rplnd procedure last Monday and had one of my retroperitoneal lymph nodes removed, only in hospital 1 night, quite amazing really, the lymph node was just over 1cm according to the Oncologist, that's partly why they choose do do this R-Rplnd procedure, apparently the general approach from the Dr's, surgeon's I'm seeing is changing and instead of the heavier Chemo or radiotherapy, the surgeons, Dr's etc decided to remove the offending lymph node first, then in 5 weeks will apply 1 hit of Carboplatin, then PET scan and see where we are.. Not feeling too bad, slightly sore, looks like I've been shot five times across my stomach/abdomen area.
Has anyone else had this kind of approach, R-Rplnd then 1 hit of Carbo?
My original diagnosis and staging was changed after a second opinion from Stage 1 no invasive no rete tested to Stage 2 with retroperitoneal lymphadenophtay..
Hope you're feeling OK after the procedure. I'm on my second cycle of a two-course Carboplatin treatment, it's not been too bad.
Regarding R-RPLND, perhaps you might want to start a new discussion thread on that?
I think its great that doctors are trying different treatment methods. I personally believe that avoiding chemo, if possible is the way to go. Im surprised to hear that you were out of the hospital so soon. Did they do a robotic assisted RPLND?
Thanks for taking the time to write back.
Good luck with the second round of Carbo, also, excuse me if I've already asked this, did your oncologist give you reasons for having two rounds of Carbo?
Yes, pre operation Dr at the Marsden said treating a Seminoma with R-RPLND was slightly different approach from the norm, CT and PET scan confirmed the retroperitoneal lymph node in two months had increased in size from 4mm to just over 1cm, therefore I was a candidate for R-RPLND, I'll still be doing one shot of Carbo in about 1 months time.
R-RPLND is the robotic assisted and apparently a lot less invasive as RPLND, i went in the morning had the operation, operation time about 2hrs 30min and walked out the following afternoon, I have five incisions on my left side across my stomach and abdomen area, smallest is 1.5cm largest 4.5cm, stomach area is sore and can be slightly tight, but I can still function as a person, just don't want to tempt picking my kids up yet.. All quite amazing really, very impressed with the whole procedure, just hope the surgeon's got everything...!
From everything I've read online, on this site, and on the US TCRC site, as well as my own discussions with doctors, it does seem that things have changed a lot in recent years in terms of treatment protocols, and also that different countries and hospitals pursue different approaches.
I am not a doctor, but from reading loads and discussing with medical professionals, what I understand about the current state is this-
- The US now generally favours active surveillance (more than other countries) for seminoma and non-seminoma as the preferred route
- For non-seminoma, RPLND for later stages has been practised more in the US than Europe (apparently because of skill level and availability of surgeons with this experience)
- For seminoma (where carboplatin can be used instead of BEP), Europe (more than the US) tend to favour 1 or 2 cycle carboplatin as adjuvant treatment
In my particular case, the pathology results post-orchiectomy showed Stage 1 "classic" or "pure" seminoma, with no signs of invasion elsewhere. I've been told this is the simplest testicular cancer to treat. It is very unusual for me to have had this (I've been told repeatedly) as I am 50 yrs of age and also it's super rare for my ethnicity. Nevertheless, I've been informed that treatment is relatively straightforward with carboplatin as I have a pure seminoma.
The reason my oncologist is doing 2 cycles instead of 1 cycle is he explained it reduces risk of recurrence with 2 cycles.
It is generally accepted based on the statistics that the orchiectomy "cures" 80-85% (with no recurrence within 5 years), so that means 15-20% will have recurrence and this may depend on factors such as size of tumour and/or rete testes invasion. (Although if you read all the medical literature, this is not definitive, as it is based on data from various trials and studies, which were considering many variables.)
Therefore, those who opt for chemotherapy as adjuvant treatment are trying to reduce the risk of recurrence from 15-20%. Some studies show 1 cycle carboplatin for seminoma brings risk down to 5-6% with 2 cycles reducing risk down to 1-2%.
Another way to look at it is, chemotherapy may be over-treatment for 80-85% since that is the statistic that you're already "cured" from the orchiectomy. Hence, this is also why active surveillance is considered and is a viable course for many.
The reasons I chose to follow my oncologist advice to do the carboplatin (instead of active surveillance) are-
(1) my age- at 50 years, doing the less harsh carboplatin now seemed a better choice for me than possibly having to undergo the far harsher BEP regime when I am older should there be recurrence;
(2) I already have children;
(3) my follow-up will have less frequent scans, than if I had chosen active surveillance, and I did not want too many CT scans/radiation exposure;
(4) I also suspect I may find it hard to stick to the active surveillance regime of frequent scans and check ups (indeed, I have seen research that shows compliance with active surveillance drops off in many men as years progress);
(5) my personality is such that I feel better reducing my risk of recurrence now, than not knowing if there may be a recurrence later.
Please note that my dosage is AUC-5 whereas I know others may have 1 cycle of AUC-10 or AUC-7. The reason my dosage is AUC-5 is because of my ethnicity, so listen to your oncologist / doctors and don't read too much into my dosage.
Thank you for the detailed response, very informative and great to get other people's treatment plans and reasons, much appreciated.
I think the 1 chemo dose I'm assigned to do is AUC-7. I hope your second hit of chemo is not causing you too much trouble and the side effects are minimal.
My oncologist told me AUC-7 is standard for caucasians, but he prefers AUC-5 dosage for smaller Asians and also because of my age.
The second hit has been manageable but I went into it slightly weaker- the blood test on the morning of my second cycle showed platelets at the lower end of the normal range, and white blood cell count slightly below normal range- this is because my immune system had already been weakened from the first cycle- so my primary concern is staying healthy during these few weeks in light of the damned China coronavirus floating around everywhere!
Carboplatin (as many others have commented on this forum) really is not that bad, all things considered (and from what I hear from those who have BEP chemo). Just fatigue and nausea for a few days, I am just over a week in from the second cycle and still a bit tired from time to time, but nothing dramatic and I've been able to eat (relatively) normally.
As another person said on this forum, just take it as it comes, rest / sleep when you feel you need to, and take it easy.
I think it is good for you to go into your chemo with all this info, I certainly found that input from this forum put me much more at ease. Good luck!
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