Some of you will have read and answered my previous questions about the treatment my Husband has been recieving in Bulgaria. Well now it seems that all the English speaking Drs have dissapeared from the hospital and for the last 2 lots of treatments we have had nothing more than thumbs up and them saying mnogu dobre (very good) and the date for his next treatment. We get his notes and I wondered if the abbreviations are universal and maybe someone on here can help me understand them.
Here are some of the abbreviations on his notes and I will add the numbers from first treatment to last weeks update afer his 3rd.
CYE110 / 86
HGB 93-86-95 / 121-143
WBC4.28 / 6.26-7.3
PLT 104-108 / 270-156
DKK - Sg 0,60 / 0,64
Ly 0,40 / 0,27
OB 101 / 80
B2mr 8651 / 3722
IgA 94,0 / 40,39
There is loads of numbers on his latest report that were not on his first as well but I think this is enough for now. I can see that his numbers have changed greatly but are they changing in the right direction ?. I would also like to know what the most important ones are and should they be going up or down.
His treatment is CyBorDex and he's geting Velcade x1.7mg on Days 1,4,8,11. Dex x 40mg Days 1 to 4 and 9 to 12. Endoxan x 500mg day 1 and day 9.
I know all this is a big ask but if anyone can help me understand all this I and my Husband will be so greatful.
Thanks Sharon.
Forums
Re: Confused, terrified, and alone
Sharon,
For me, I generally pay attention to my raw blood counts (white, red, hemoglobin, hemocrit, platelets), along with creatinine (tracks kidney function), total protein, calcium (how are my bones holding up?), albumin, beta2micro and IgA (since I have IgA Kappa myeloma).
In a nutshell, from the results below, your husband's IgA level has been cut by over half, which is a very good sign, and his B2M has dropped significantly. (High B2M is generally a sign of some sort of cancer badness going on.) Conversely, his hemoglobin, WBC, and platelets are rising, which is also a good sign.
Hope this helps - It looks like the treatment is working well.
God bless,
Russ
For me, I generally pay attention to my raw blood counts (white, red, hemoglobin, hemocrit, platelets), along with creatinine (tracks kidney function), total protein, calcium (how are my bones holding up?), albumin, beta2micro and IgA (since I have IgA Kappa myeloma).
In a nutshell, from the results below, your husband's IgA level has been cut by over half, which is a very good sign, and his B2M has dropped significantly. (High B2M is generally a sign of some sort of cancer badness going on.) Conversely, his hemoglobin, WBC, and platelets are rising, which is also a good sign.
Hope this helps - It looks like the treatment is working well.
God bless,
Russ
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Russ - Name: Russ
- Who do you know with myeloma?: Me, Myself, & I (and a few others)
- When were you/they diagnosed?: February 2011
- Age at diagnosis: 41
Re: Confused, terrified, and alone
Russ thankyou so so much for your quick reply. I will sleep better tonight. I just need to learn what they all mean and what should be up and what needs to be down and you have started to make me understand. We have so much to learn and this forum is a great help for us. Thankyou and may god bless you too. x
Re: Confused, terrified, and alone
Sharon -
Here's some additional information: The doctors will constantly monitor your husbands white blood count (WBC), red blood count, ANC or neutrophil count, and platelets (PLT) level. There are three parts to the red blood count -- total red blood count, hemoglobin (Hgb), and hematocrit (Hct).
If I'm reading the numbers correctly, it looks like your husband's white blood count, hemoglobin, and platelets are in the normal range, which is excellent.
When I first was diagnosed, my oncologist checked the extended blood panel (things like creatinine, total protein, calcium, and albumin) frequently, but now he checks them quarterly. Changes in them can indicate that the myeloma is active.
Send best wishes to you and your husband.
Here's some additional information: The doctors will constantly monitor your husbands white blood count (WBC), red blood count, ANC or neutrophil count, and platelets (PLT) level. There are three parts to the red blood count -- total red blood count, hemoglobin (Hgb), and hematocrit (Hct).
If I'm reading the numbers correctly, it looks like your husband's white blood count, hemoglobin, and platelets are in the normal range, which is excellent.
When I first was diagnosed, my oncologist checked the extended blood panel (things like creatinine, total protein, calcium, and albumin) frequently, but now he checks them quarterly. Changes in them can indicate that the myeloma is active.
Send best wishes to you and your husband.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Confused, terrified, and alone
Thank you Darnold
I was going to ask what normal range was and you have answered that for me. He goes back in on Saturday for round 4 and then might be his lot as they said 4 to 6. They are only expecting partial remission and he can't have SCT but what you guys are saying is giving me hope that partial will be enough to keep him alive and kicking for a good while longer.
Thanks again and take care. x
I was going to ask what normal range was and you have answered that for me. He goes back in on Saturday for round 4 and then might be his lot as they said 4 to 6. They are only expecting partial remission and he can't have SCT but what you guys are saying is giving me hope that partial will be enough to keep him alive and kicking for a good while longer.
Thanks again and take care. x
Re: Confused, terrified, and alone
Sharon,
This is somewhat off topic and probably what I will say you have already surmised, but I would suggest, if you have a chance, to transport your husband back to the U.S. to be treated by a myeloma specialist here. It happens that I am Bulgarian (many years in New York now). I visit the country every year. In fact, my spontaneous fracture that lead to my myeloma diagnosis occurred in Bulgaria. I was misdiagnosed there and luckily for me, doctors took over in NYC when I came back. I am raised by a family of Bulgarian doctors, my dad and my sister are both physicians in Bulgaria. I think highly of them, but regreatably, my observation is that in Bulgaria they have limited experience with this decease, which is understandable because it is a small country with very few cases. Also, what's available in Bulgaria as far as medication and protocols would not be the latest and greatest. I am surprised in fact that your husband is getting Velcade. I am not even sure that would be available for a Bulgarian under the local medical coverage. In too many words, my humble advice is, to get back your husband to the US as soon as possible.
Good luck.
This is somewhat off topic and probably what I will say you have already surmised, but I would suggest, if you have a chance, to transport your husband back to the U.S. to be treated by a myeloma specialist here. It happens that I am Bulgarian (many years in New York now). I visit the country every year. In fact, my spontaneous fracture that lead to my myeloma diagnosis occurred in Bulgaria. I was misdiagnosed there and luckily for me, doctors took over in NYC when I came back. I am raised by a family of Bulgarian doctors, my dad and my sister are both physicians in Bulgaria. I think highly of them, but regreatably, my observation is that in Bulgaria they have limited experience with this decease, which is understandable because it is a small country with very few cases. Also, what's available in Bulgaria as far as medication and protocols would not be the latest and greatest. I am surprised in fact that your husband is getting Velcade. I am not even sure that would be available for a Bulgarian under the local medical coverage. In too many words, my humble advice is, to get back your husband to the US as soon as possible.
Good luck.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Confused, terrified, and alone
Hi Ivanm.
We are from the Uk and have lived here for 3 years and have no home back in England. I must say though that we are impressed with the health care he has been recieving and he was getting his first round of treatment 8 days after diagnosis in Plovdiv under the care of Professor Goranov.
He was diagnosed in a gynocological unit in Stara Zagora and I think that in itself is very impressive. It's just the language barrier that we stuggle with and now that the lovely English speaking lady Doctor has dissapeared, we are not really getting told much other than that are very happy with his response.
May I ask you why you are suprised that he is being given Velcade, is this not a good drug for him to be taking. Oh by the way we have had our UK health care transfered so they are footing the bill but Eric is 67 and paid into the system all his life. If we hadn't been able to do this we would certainly have had to return and stay with family. God bless the EU.
Tanks for your input.
We are from the Uk and have lived here for 3 years and have no home back in England. I must say though that we are impressed with the health care he has been recieving and he was getting his first round of treatment 8 days after diagnosis in Plovdiv under the care of Professor Goranov.
He was diagnosed in a gynocological unit in Stara Zagora and I think that in itself is very impressive. It's just the language barrier that we stuggle with and now that the lovely English speaking lady Doctor has dissapeared, we are not really getting told much other than that are very happy with his response.
May I ask you why you are suprised that he is being given Velcade, is this not a good drug for him to be taking. Oh by the way we have had our UK health care transfered so they are footing the bill but Eric is 67 and paid into the system all his life. If we hadn't been able to do this we would certainly have had to return and stay with family. God bless the EU.
Tanks for your input.
Re: Confused, terrified, and alone
I am happy to hear that you are satisfied with the help you and your husband are receiving. Maybe my comment about Velcade mislead you. In my experience, it is an excellent drug and it has done miracles for me along with Revlimid. In the States, the new versions of these drugs were approved recently by the FDA, Carfilzomib and pomalidomide. What I meant was that I am surprised that this drug is even available in Bulgaria. It is an expensive drug. Maybe your UK insurance helps. Good luck once again.
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ivanm - Name: Ivan Mitev
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August, 2011
- Age at diagnosis: 37
Re: Confused, terrified, and alone
First off, I am Canadaian 
But I wanted to suggest you try and arrange a telephon consultation wtih an English specialist. In Canada we don't really do this, you get who you get universal healthcare, But I have read on this forum of people arranging that, so maybe try the big cancer centres and see if you can send test results and have them comment on them?
Another suggestion is to arrange a translator attend his appointment with you.
Again, I do not have any experience doing this, but I work in the legal system and we arrange translators all the time. Even if people speak some english, it is easier for them to sometime have complicated legal terms etc translated into their first language.
Do you have a close friend or someone from work you could ask to attend with you? In my experience when people hear you or you loved one have cancer they want to help, but they don't know how, and this would be a blessing to you if someone could act in this regard.
take care,
Alyssa
But I wanted to suggest you try and arrange a telephon consultation wtih an English specialist. In Canada we don't really do this, you get who you get universal healthcare, But I have read on this forum of people arranging that, so maybe try the big cancer centres and see if you can send test results and have them comment on them?Another suggestion is to arrange a translator attend his appointment with you.
Again, I do not have any experience doing this, but I work in the legal system and we arrange translators all the time. Even if people speak some english, it is easier for them to sometime have complicated legal terms etc translated into their first language.
Do you have a close friend or someone from work you could ask to attend with you? In my experience when people hear you or you loved one have cancer they want to help, but they don't know how, and this would be a blessing to you if someone could act in this regard.
take care,
Alyssa
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Confused, terrified, and alone
Thanks Ivanm for clearing that up, I did think that you meant that it was inferier treatment. Maybe Bulgaria are moving forward with there health care.
Lys, thanks for that suggestion, as I am from Uk maybe someone from MacMillan will be able to help us by sending information packs and also suggestions on any dietry needs that night help him through it all. Thanks again both of you. x
Lys, thanks for that suggestion, as I am from Uk maybe someone from MacMillan will be able to help us by sending information packs and also suggestions on any dietry needs that night help him through it all. Thanks again both of you. x
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