Tatt's chemo report

[Tatt]

Hope people dont mind but felt like sharing my experiences so far at the end of my first week - to help me catalogue it as much as anything else. all comments welcomed

Diagnosed 6 June, Right Orchiectomy 8 June,
Mostly teratoma; some yolk sac and seminoma. AFP raised but disappeared after orchiectomy. HCG still slightly raised. CAT scan showed thumbnail sized tumour in abdominal lymph node
Started 3xBEP 3rd July

First day on cisplatin and etoposide went OK, but seemed to react badly to the etoposide - hiccups main problem but bearable. The second day on all three drugs was worse. Hiccups came again after two hours on the etoposide, and slight nausea. That night was horrible - didnt feel nauseous in that I didnt feel like i wanted to be sick, but i really couldnt keep anything down. So felt a bit battered on the last day. THink the lack of sleep and sickness made it more difficult.

Back home on anti emetics, am keeping nausea at bay, and trying to get into a regular eating pattern. Feeling constipated which isnt helping things - despite lots of warm drinks, peppermint tea and other things to help it along. But as each day goes on am feeling more human again. Consultant wants to talk about how to approach the next round, and hopefully make it go smoother. Focussing on one week down, and only 2 more week long treatments to go in the cycle. How tough do people find the daily bleo treatments at the end of each cycle?

Finding it hard to focus much attention on things - not sure if its due to fatigue from drugs or just interrupted sleep. had hoped to read lots but find it difficult to concentrate for long. Feet and hands feel very warm and tingling. My remaining testicle also seemed shunken and more sensitive on treatment, but that seems to have got back to normal now.

Got to say these forums have been great to get information and inspiration - i hope i can share my experiences as well and cleaerly as everyone else has, at least to let people see what others go through too.

[Scott]

Catalog away! We appreciate hearing how things are going and welcome questions.

[indiana9]

Hi Tatt,
Take things one day at a time and you will be through this before you know it. For me I was the most tired on the "bleo" days and felt weak in my legs. I did go into work after the bleo treatments but generally left after a few hours and went home and napped. The rest of the time leading up to the 5 day outpatient cycle always seemed like a mini-vacation to me as life returned somewhat to normal. I did have some pretty severe heartburn issues while taking the oral steroids between cycles that I eventually controlled with Prilosec OTC. Good luck with your chemo treatments and it will be interesting to read how your next few weeks go!
Brian

[Tatt]

I had my booster of Bleo on wednesday - felt fine during the infusion, and went out and about afterwards still feeling great - until about 5 hours post-infusion when my energy levels suddenly slumped. Felt completely exhausted, and strangely mt joints really started to ache - especially my elbows, which felt like there was sandpaper between the bones. THankfully i was OK after sleeping overnight. I've read this can be a symptom of anaemia as the red blood cells die off - is there anythign ican do to help this?

Apetite is fairly normal at the moment - but taste have started to change a lot, and not enjoying much of my old favorite foods. Craving really greasy foods, which is odd for me. Also some foods just the thought of makes me feel queasy - dont think i could stomach a bowl of milk and cereal for example

[indiana9]

I too craved greasy foods during chemo with my favorite lunch while in the hospital consisting of Fries and a quarter pounder w/ cheese. Other great tasting foods for me were baked potatoes, pasta, marinara sauce, butter, cottage cheese, sour cream, and just about anything high in carbs. Crackers and chips tasted terrible to me. Don't be surprised if you wake up in the middle of the night with hunger pangs due to the steroids they pump you up with. BTW, I gained 24 pounds during my chemo treatment even though I was walking etc., as much as possible. Good luck!

[Tatt]

Quick update as halfway through my second cycle now

THe last marker count was good - from being AFP/HCG being slightly raised at the start, HCG was only a few points above baseline in the last test. FOcussing on this as a positive.

I suprised the nurses too - my white blood cell count was in normal parameters at the start of my second cycle - not sure if this is a good sign that my body's fighting things off, or if its a sign the drugs arent doing their job!

Nausea seems stronger with the second cycle and the chlorpromazine isnt helping to maks it much. It seems more of a psychological nausea too - thinking about certain foods or things too much makes me gag, and sometimes it feels like all i'm doing is concentrating on not vomiting. But that said, i'm keeping food down and as long as my mind is occupied, it's bearable.

My joints still ache and i'm hardly getting out and about at all - a lot because i'm worried about being caught somewhere when i feel ill

On positive news - the last day I have my final bleo treatment has just been confirmed as the day i complete the purchase of my first house with my girlfriend. Somethign great to look forward too, tho i dont think i'll be much help with moving!

[dadmo]

Tatt:
It sounds like everything is going well. The markers comming down is great and so is the fact that your white count is ok. Good luck with the new house.

[Fish]

Glad to hear things are going well. If the chlorpromazine isn't as effective, talk to your doc, there should be some other meds they can prescribe.

Best wishes.

[Ras Joe]

I agree with Fish, there are other things that can help. This is just a crazy thought-- being that you are in the UK I know that you have more and LEGAL access to alternative therapies for nausea and vomiting such as medical cannabis. I have read that the UK has some of the world's leading research on medical marijuana, with doctors providing their positive views on the safety and efficacy of medical marijuana in prominent medical journals such as The Lancet. I am not telling/suggesting that you go out and do anything, I just hate to hear of the suffering that comes with chemo and this may/could be an option if all else fails. Of course, first and foremost, talk to your doctor before taking ANYTHING when doing chemo. God Bless.

(Genesis 1:29)
(Jeremiah 29:11)

[Scott]

I have read that the UK has some of the world's leading research on medical marijuana, with doctors providing their positive views on the safety and efficacy of medical marijuana in prominent medical journals such as The Lancet.

Be aware that marijuana use can cause a false positive hCG test.

[Tatt]

just about to go in for start of my 3rd and final BEP cycle - and I'm dreading this one so much! It doesnt help that the past couple of days i've been feeling the strongest and best in a long time, and now i know i'm going to have it knocked out of me again. Still having trouble with nausea whenever i think about some of the hospital foods, so am taking in some snacks with me and hoping that i can cope with it. Tempted to ask to be put to sleep for the next week, so i can just wake up and have everything done.!

Really hope this last cycle goes smooth - and better than my second.

When can i expect my next CT scan to see if the chemo has worked? how soon after the treatment can they get a meaningful result?

[dadmo]

My son didn't have a scan until 6 weeks post chemo. My take on the medical marijuana issues is that if the doctors can give you chemo and morphine they shold be able to perscribe marijuna for appetite stimulation. As Scott mentioned in the case of tc patients it can have a negitive affect on your blood work, which could effect how your doctor treats you.

[Davie]

Hang in there Tatt, not long to go now.

If it's any consolation, the 3rd cycle for me was no worse than the second.

The biggest indicator that the chemo has worked is a normalisation of your markers (that is if they were raised in the first place). In this instance, and as a good risk patient I was told it was unlikely there'd be any live cancer left.

The CT scan will only tell you if there is residual mass. I'm in the UK and I had a scan directly after the end of my chemo. This showed some residual mass. Given that my markers normalised relatively quickly, and in their words "not wanting to overtreat me", I was given another 3 months to see if the mass would shrink further, otherwise surgery. A shrinking residual mass indicates necrotic tissue being reabsorbed by the body.

The policy in the UK is that any residual mass over 1 cm is removed by surgery as it is deemed to contain benign mature teratoma (teratoma differentiated). This is because the benign teratoma can dengenerate into more difficult to treat cancers much later in life. However, medicine is not an exact science and in some patients with a residual mass greater than 1 cm, necrotic tissue is only found during surgery.

Similarly, a residual mass of less than 1 cm can harbour some mature teratoma, hence the requirement to undertake regular CT scans.

The best result is to find no residual mass whatsover. I hope you get that result.

Good luck with the 3rd cycle......Davie

[Tatt]

Well, I've just met with the consultant following my post-chemo CT scan. The small mass in one of my lymph nodes has changed but they arent sure what this means - if dead tissue, differentiated tissue, or if still harbouring tumour. All blood markers are good; only slightly elevated after the orchiectomy and disappeared during chemo. So I'm being put on hold for a couple of months beofre a second scan in November in the hope the mass will be absorbed by the body and disappear. I'd been hoping it'd vanish during the chemo, but now i just have to hope my immune system can get into gear and clear it if it is just dead tissue.

One thing the consultant said that puzzled me on reflection - he mentioned that the size of the mass is so small its on the limit of whether they would do surgery or not to remove it - now i'm wondering what the rationale behind this might be?

So, all in all not he perfect answer i'd hoped for, but 2 months of crossing my fingers and a second scan before i know whatsgoing on. Annoying that it might mean surgery over christmas.....

[Kman99]

the mentioned that the size of the mass is so small its on the limit of whether they would do surgery or not to remove it - now i'm wondering what the rationale behind this might be?

I have not been through Chemo, so hopefully others will chime in too. But, the small mass may be necrotic tissue which will be absorbed into the body, making surgery unnecesaary. Or it can be a benign teratoma (which chemo wouldn't have an affect on), that may grow and ultimately become malignant. This would make surgery a necessity.

So, I think the plan to wait for another CT is wise at this point