Carboplatin single dose experience

[Silicon]

Hi everyone,
This is my first post to the forum. I've been on for a little while and thought it might be good to share my experience with my treatment so that it can inform others who are going through the same thing.

To give some context, I had surgery in June 2017 to remove a Stage 1A pure Seminoma. It had been there a while but I'd never thought to get it checked as it was such slow growing. In any case I got an ultrasound, then a CT scan which confirmed TC. Had Orchidectomy within a few days. Ended up back in hospital for 4 days due to infection but after a couple of weeks was feeling better... Just in time for Carboplatin! I'm on the second day after Carboplatin and thought I'd keep a journal here to help others who are going through the same thing. To be honest I'd say one of the hardest decisions to make throughout this ordeal has been whether or not to even do the carboplatin. It's an adjuvant treatment and really you don't know if you're just putting your body at risk for no reason. Basically they told me is all about lowering your risk profile which is why I opted for the treatment.

11-Aug-2017: Day of carbo treatment. Arrived early but had to wait an hour before being treated as they were quite busy. They set me up in a comfy chair and hooked up the cannular for the IV. I don't mind needless but it's not a very pleasant experience. I feel for those people going through this with a fear of needless... Seems like I'm a pin cushion these days! They first administered some saline, then some steroids, then got on to the carboplatin. All of this took about 50 minutes. No real discomfort during the process apart from arm feeling a bit cold during the process. After it was done I really didn't feel too bad. Maybe a little light headed but nothing too noticeable. Got home and ate dinner. No real side effects at this stage apart from wanting to pee a few times.
Day 2: woke up about 4 am and couldn't get back to sleep. Felt quite heavy, like I was wearing lead pyjamas. Got up anyway and had some water. Felt better after that but could not go back to sleep for a few hours. Felt a bit weird, cloudy, but nothing too worrying. Got to sleep in because it is the weekend and am going downstairs to try having some breakfast. No nausea or vomiting at this stage. So far so good. More to come...

[John.R]

Thanks for sharing, I'm currently trying to decide whether or not to do the adjuvant. Is it only the one dose?

[Silicon]

Hi John, nice to meet you. Yes only the one dose for me. I have read quite a lot of research about the adjuvant treatments. There are schools of thought regarding doing 1 or 2 doses for adjuvant. For me the risk profile was 10%-15% for relapse or about 5%-7% if I had the single dose. Apparently two doses can potentially reduce that further but I figured to hedge my bets as, at the end of the day, I may already be cured and am putting myself through unnecessary additional risk. The other motivating factor in my decision was that, if I did relapse, I'd be staring down the barrel of 3 months of BEP chemo which would definitely not be ideal so lowering the risk profile to half of what it was under surveillance only seemed like a good option. Frankly it's a numbers game. I really didn't get any sort of recommendation from the doctors... They just laid out the odds and probabilities and left it to me to decide based on my what sort of risk I could comfortably live with. I imagine you're going through the same thing? I would also add that a few days/weeks of discomfort are a small price to pay to lower the risks. I also have 2 kids under 4 so being out of action for 3+ months for relapse treatment would not be ideal at all. The other thing I researched was the increase risk of secondary cancer as a result of adjuvant chemo. From what I found there is not a lot of research but what they're is does suggest a correlation though the increase in risk is quite low and doesn't usually compound until many years after treatment. Ultimately you'll need to weigh all this up but in my mind it seemed like a good bet. Best of luck.

Day 2: I forgot to mention that I had a slight cold going in to this treatment so I was already not feeling 100%. I asked the doctor about this and they said that as long as its not serious there was no reason to not go ahead with the treatment, so I went ahead. Suffice to say that this has probably blurred the symptoms a little regarding what I'm feeling that relates to the carboplatin and what relates to the cold I have. I'll mention everything just in case but certainly there are side effects that I've noticed that I would not consider cold related. Today was pretty OK. I felt a bit under the weather but nothing too noticeable. I was able to function pretty well. Had a general feeling of lethargy but wasn't enough to keep me in bed. I did rest a few times briefly just to regain some energy. Couple of things I have started to notice. One is that my taste is a little off. Nothing drastic but food does taste a little different, perhaps bland and slightly metallic. It's not unpleasant but it's noticeable. I also started to feel a little light headed and am feeling a bit queasy in the stomach. I have taken the anti nausea tablets which are helping for sure but have noticed an uneasy feeling in the tummy. It's not worrying me though as its very mild at the moment. I have other tablets which I can take on an as needed basis of it gets worse.

Apart from that really nothing noticeable at this stage. I expect that things may get a little worse before that get better but at this stage is been quite manageable. Just keeping up the fluid intake and trying to stay somewhat active I think has helped. Quite unavoidable really when you have 2 small kids but that's OK.. Those with kids would know that life doesn't pause when you get unwell!

Thanks to everyone who contributed to this forum. It's been really helpful for me during this journey.

One thing I was going to add was that there does not seem to be a test that can determine if the cancer has already spread to the lymph nodes after an orchidectomy. Basically that's the reasoning for doing adjuvant treatment. It seems like this might be a good field of research? I can see that a test that could conclusively rule out TC spread to lymph nodes after orchidectomy would really help those deciding on adjuvant treatment, don't you? I wonder if it's worth approaching a research institute for some information on how this might be done?

Anyway will update you again tomorrow!

[Silicon]

Day 3: Feeling pretty average today, as I kind-of expected to. Taste buds are still off a bit. Appetite has eased off and have hiccups and a little heart burn. Feel a bit lethargic and basically a little unwell. Light headedness and queasiness and still present but only very mild. Overall none of the symptoms are overwhelming or preventing me from doing the usual things around the house. Just trying to take it easy and not ask too much of myself. Cognitive function seems OK. No issues with vision or anything like that. That's about all to report thankfully. I'll update you all again tomorrow.

[Davepet]

One thing I was going to add was that there does not seem to be a test that can determine if the cancer has already spread to the lymph nodes after an orchidectomy. Basically that's the reasoning for doing adjuvant treatment. It seems like this might be a good field of research? I can see that a test that could conclusively rule out TC spread to lymph nodes after orchidectomy would really help those deciding on adjuvant treatment, don't you? I wonder if it's worth approaching a research institute for some information on how this might be done?

Well the CT scan give a pretty good indication, although it might miss micro-mets. If a conclusive test for those could be discovered, then it would no longer be adjuvant chemo, it would be actually treating a known cancer.
Dave

[Silicon]

Yeah it's the micro-mets that are the concern, and generally the reason why someone opts for adjuvant treatment... Because it's not known if any rogue cells have settled somewhere else already. Showing up on CT and/or tumour markers is too late... Food for thought.

Day 4: still feeling about 60% my usual self. Just generally run down. Still able to function pretty well though. Didn't realise that I had not been to the toilet to do No.2 in a couple of days.. Finally went today and sure enough was pretty backed up, so to speak. Was not fun. Got straight on to the prune juice and laxatives which helped. Had hiccups and a bit of indigestion but both were mild. Just generally still feeling run down. I assume the red blood cell count is down due to the treatment which is causing the lethargy. Trying to keep the iron levels up by eating red meat etc.

Once again overall still functioning, just not firing on all cylinders again yet.

[Onenutpete]

Hey Silicone thanks for posting this man and hope you are feeling better.

I am going through exactly the same path as you, stage 1A pure seminoma, just one month behind you. Had the surgery late July and thinking of whether or not to for the chemo.

From your posts it sounds that although uncomfortable the whole thing is manageable... Please please keep up us updated.

All the best and hope you have a speedy recovery.

[Silicon]

Hi Onenutpete... Sorry to hear you're going through something similar. Yeah it's definitely a tough decision. As I mentioned in one of my earlier posts a lot of it comes down to your own personal comfort level with regards to the risks. All the best with whatever you decide.

Day 5: feeling a little better than yesterday. Still had a bit of constipation but it wasn't as bad as yesterday as I am taking some things to help. Ringing in the ears it's still slightly present but mainly when resting as there is little other ambient noise. Taste is still a little off but only mild. Nausea is pretty OK.. Still feel a little weird in the tummy but once again it's very mild and is not constant but comes and goes. Energy levels are probably around the same or perhaps a little higher than yesterday which is good. I think sound light exercise is very helpful with this... Just be careful not to over do it. Trying to have good meals that have vegetables and meat is helping I think too.. Seems my appetite has not really suffered. Cognitive function seems OK. I've been writing work emails which hasn't been too bad though I do think it's taking slightly longer to process information and formulate responses. Pretty much functional albiet at about 70% of normal I'd say. Still lack a bit of energy but don't seem to be going downhill in that regard any more. Sleep patterns are pretty OK but I have 2 kids under 4 so that hasn't been normal for a long time 😄

Overall I'd give today a 7/10. All symptoms manageable at this stage.

[Silicon]

Day 6: not a huge change from yesterday. Still feel a bit run down and slightly unwell. My appetite seems OK. I have found that eating actually helps settle my stomach a bit. Energy levels are still pretty average but perhaps slightly improved. Overall still functioning OK. Have driven the car a few times which has been fine. Taste is still a little weird but I expect it to be for a few days yet. Still a little bit constipated but trying to eat the right foods to counter this. Hemoglobin bottoming out in a day or two id say so I expect to feel run down for a few more days yet.

[Silicon]

Day7/8: I think today was a bit of a turning point. I woke up feeling actually pretty good. I still have a few small symptoms but I didn't have that queasy feeling in my stomach. My taste is still off but it's not a big deal. I am definitely not back to peak fitness but certainly I felt like I had more energy than any day previous. Probably back to about 80% my normal self. Only real noticeable thing now it's I get tired pretty easily. Hopefully things will continue to improve from here on.

Wishing everyone well in their respective journeys.

Will update again soon

[Daniel_Eye]

Have you lost any hair? I doubt you would since it is such a short treatment but I'm just curious.

[Silicon]

Day 9/10/11: hey guys. A quick update. I am feeling fairly good. My energy levels are higher and I am mostly back to my normal self albiet around 85/90%. Main symptoms have mostly subsided. Taste is still off and still have a little bit of constipation but only mild. I did lose my voice a bit as of yesterday. I think I have struggled to kick the cold I had when I started the chemo. I sound like the godfather at the moment. Hoping that will get better in the next few days. All in all feeling pretty good. Will wait another week before getting back in to exercise again I think. Just light exercise at the moment is fine.

Daniel: I have not noticed any hair loss. I'm 40 and I already have a slightly receding hairline but I have not noticed any unusual hair loss from this. I have not noticed,for example any clumps of hair while having a shower or anything like that. Yeah I don't think a single dose is enough to cause hair loss... Which is a relief.

All the best everyone.

[Silicon]

Days 12-15: Hi everyone, just wanted to touch base and let you all know that I'm probably back to about 95% of my normal self now. Energy levels are mostly back. Side effects are minimal. Taste seems pretty good again. I lost my voice for about 3 days but I think that was probably a combination of being run down plus already having a cold when I started chemo. I'm pretty much over the cold now and my voice is back to normal. Will be trying to get back in to some exercise again soon.

Overall id say the experience is 'unpleasant' but manageable. Considering it's only 2 weeks of discomfort to reduce my relapse probability by half I think it's worthwhile. Best wishes to all.

Cheers

[Trekga]

Glad you are feeling better. Wishing you the best.

[Torrtoise]

Thank you so much for posting your journey. I have also just made the decision to have the same treatment and it’s reassuring to read other people’s experiences.