tumour markers???

[ivannabanana]

Hi agian everyone, hope everyone is doing well.... I have a Q hopefully someone on here can help me wyth.... My husband has an extra gonadal germ cell tumour .... We are told its testicular cancer but he dont have any tumours on hys testicles but has a tumour in hys abdomen and we thynk he has in hys chest as well... He started 4 x BEP on 29 AUgust and after a shaky start he is getting there now... Today he called me to tell me that a doctor had told hym hys tumour makers are down to 6 + 7 last week they said they were at 128 and beofre chemo started theywere up at 1500....what does thys mean? Hys tumour is seminoma....my hubby only was 40 yrs old in July thys year..... We have neva saw a pathology report, but i thynk thyngs are little differnt than in USA... I have asked for a copy of it and have been told we will get one when doc remembers to get one printed.... My hubbys tumour is size of small melon and sits behind kidney and is leaning on main artery that takes blood to the legs..... any info gladly appreciated.... Im so scared of losing my husband, im scared the doctors have missed somethyng.... the boy in next bed to hym has similar as in he has no tumours inhys testicles either but he dont have any abnormalities in hys chest x rays... he is getting 3 x BEP...but he had undescended testicle as a baby.... My hubby gets hys chemo over 5 days in hsopital but thys boy gets hys over 3 but hys chemo bags are always larger doses...like the other night my hubby was only on 37mg of cisplatin yet thys boy was on 85mg.... why do u thynk thys is? im real worried my hubby not gettin enough.... please help me.... thanx

[dadmo]

ivannabanana:
You need to contact an expert on testicular cancer. Your husband’s problem is very rare and you can't afford to have just anyone oversee his treatment. Just click here here for the list of experts. Even if you can visit in person request that your oncologist contact one of these experts. If he isn’t sure which one, have him call either Dr. Einhorn in Indiana or Dr. Motzer in NY.
The tumor markers dropping is a great sign that the cancer is being killed by the chemo but contact an expert anyway, it’s really important to get this right.

[ivannabanana]

Dr Einhorn

Hi dadmo

I forgot to say inlast post i had emailed Dr Einhorn and told hym about my husband and asked hym what treatment he would gyve my husband he said 3 x BEP.... i am quite happy at Glasgow they are gyving my husband 4 x BEP so is that not good? ... sorry i forgot to say .... Also the doctors at Glasgow Oncology Centre have told my husband that altho it is rare it is not rare for them as at the moment there are 3 cases all in the same ward as my husband (i never knew thys tyll i done some detective work myself, basicilly just being downright nosey and upfront i asked some guys outright) Glasgow is Scotlands top cancer centre... and also one of guys on your list mr Stanley Vasey worked at GOC and has worked along side the doctors who are treating my husband...these are all good pointers, i hope...what do u guys thynk?.... thanks again for reply, i dont know what i do wythout u guys... its real hard sometymes when im on my own my mind goes into over drive.... bless you ......

[dadmo]

It certainly sounds like your husband is in good hands, he should be very proud of the work you have done on his behalf. Good Job. I just have one suggestion, make sure the doctors do tests on your husbands lung function. Four round of BEP is a lot, but he is in the hands of experts.

[ivannabanana]

Lung function tests

Hi again

Yeah dadmo they have been checking hys lungs...each tyme before he starts hys 5 days (he just finish hys 2nd set of 5 days) he gets lung function tests... he told me he done better the 2nd time than he had the first.... strange but true.... thanks for advice it is very much appreciated.... He gettin home today for 2 weeks just visit out patients for bleomycin injection on each friday.... So i will kept busy...its great to have hym home even tho i thynk he gets bit worried in case somethyng should go wrong....thanks again Yvonne

[Eric V.]

I did not have any tumors in my testes either, but had a 12cm mass in my abdomen and was diagnosed seminoma staged 3b. I went through 4 x BEP finishing in april. Tomorrow I will have a cat scan to check on remaining mass in abdomen.

[dadmo]

Eric:
Welcome to the forum and good luck tomorrow. Is this your first follow-up since your chemo? Where are you being treated and what were your symptoms?

[ivannabanana]

Hi Eric

Its so good to hear from someone in the same prediciment as my hubby... I see you have been told how large your tumour was, we have justbeen told its a biggy and that its size of small melon... no actual dimensions.... We are in scotland on the west coast Rabbie Burns country!!! Where about are you? You got same treatment as my hubby 4 x Bep...he just started hys 3rd cycle on Tuesday there... So far so good... I hope everythyng is ok wyth your scan, im sure it will be, i will be thynking of you and your family i know how tense the waiting kan be.... Please keep us up to date.... bless, Yvonne

[Arwen]

Hi Yvonne

My hubby is also attending the Beatson. He has just started 3X Bep today.Its hard sometimes watching young guys go through this. I have been at the clinic on a Frid am for last 4 weeks and its scary seeing young fit and healthy men go through this.

We worry for them, and yet bottle up our emotions because they have enough to cope with without us losing the plot as well.

I hope you are OK and your hubby is coping-and you too..........

[ivannabanana]

Hi Arwen

Nice to hear from another Scottie on hear.... My hubby is on 4xBEP and is half way thru hys third cycle.... We will be up at the Beatson on Friday appointment is for 9.45 am... Which Dr is your hubby under? My George is under Dr Jeff White...I will be wearing long brown corded coat if you fancy sayin hello...im Yvonne by the way...i have posted a few threads on here if you fancy reading thru them save me repeating myself to all the others who have had to endure my long threads ..... Thys has been a very helpful forum to us and we are grateful to everyone on it (thanx guys).... My email adres is [email protected] if you wanna email me privately, altho i always just post on here cos i lyke the others to know wots going on as they are very nice and they can help you alot of the tymes, but the offers there.... can i be really rude and ask how old your hubby is? becos my hubby just turned 40 there in July and he is the oldest in the wee crowd of guys who go in for their IV chemo... Is he in the Beatson just now? is he on schedule A? sorry about all the Q's...Im terrible for comparing... I hope he is doing well,the Nurses in the Beatson are all lovely.... Take care , bless Yvonne

[Arwen]

Hi Yvonne

Hubby is 36. He is beginning to feel old too. Jeff White is his consultant too. I found him ok, but thought he looked like a salesman....Yes he is in just now, get out tonight hopefully. I normally wear a brown suede jacket and look knackered........ I will be at clinic next Friday with hubby. Nurses are great, cant fault them.

At the moment we are kinna going with the flow, I have asked all the questions I need to ask at the moment, I am sure things will crop up as we go along. If you see this mad wumman approach you near the tea bar, Ill say hello.........

[Wilco]

hiya,

i just want to say that Jeff White treated me during my time at the beatson and he is the best of the best!

A fantastic doctor and your husband is in the best possible hands,

How is he doing now?

[ivannabanana]

Hi Wilco

i just read your story !!! Wow!!... My hubby was in last week for 5 days chemo he has another 2 injections the next 2 fridays then that is hys chemo fonished... He has had 4xBEP.... I have to say reading other guys stories makes me feel real lucky becos apart from georges wee stint in ICU after hys first week of chemo he has came thru it fairly well.... He has had the hair loss, the mouthulcers and the weightloss the fatigue but he has coped well....I am so proud of hym... My husband has never once complained.... We have a date for hys CT scan which is 21st Nov, which incidently is my mothers 7oth birthday....It will be a very anxious tyme waiting for the results of that scan.. My husband dont have any tumours in hys testicles he has large tumour in hys abdomen and we thynk in hys chest....Hys cancer is quite rare it is called extra gonadal germcell tumour...We have been told it is seminoma...I believe that he has the a very good team of docors at the Beatson... We have Dr jeff White, Ian M'pherson Dr baxter,and a few others.... We are due at the clinic onfriday for hys bleomycin injection...YOu should be very proud of your self for what you have been thru and you styll have your sense of humour, that is quite an achievement, well done to you... I hope you feel better each day, bless you, Yvonne

[Wilco]

thank you for your kind words,

I hope that everything works out for you!

You will have to keep us updated!