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Quincypp's Message Board Messages

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well I saw my dr on Friday - turns out that the first hema didn't do all the tests - missing the immoxification test that would have identified the mprotein and if there was a spike. The dr isn't thinking this is MGUS or MM - rather Lupus. So we'll see - did more blood work - go back Nov 23. Did anyone go down this path first?

My husband had testicular cancer - he was lucky his hadn't spread, was slow growing and was constantly told well if you had to have a cancer this one is a good one to get since the cure rate is so good (96% survival over 15 years or something). He still had his testical removed (that alone was tramatic) had radiation therapy (not pleasant). he didn't look sick. Didn"t act sick. He has been cancer free for 15  years -but still has to have tests to check for other cancers as it can return as well as the effects of radiation therapy increase his changes for bowel cancers. So yes, i do know what you mean about people saying 'its only..." Cancer is cancer is cancer. Just the word sends shivers down anyone. You never know what it could lead too or how it will affect your body. Good luck with your situation - all the best. I find people who don't know what to say often say stupid things. When they should just say nothing at all sometimes!

take care

quincy

I am hoping this can be explained to me. I see my hema/onc next week (no diagnosis of anything yet) i have an abnormal lambda/kapp ratio (2.3) on my Free Light Chain test with the free kappa measuring 45.5 mg/L. But my SPE tests show only a slightly higher alpha globulin result different labs have different ranges - but am always just over the normal for either lab. Reading the MM Canada page it says the immoxification test will show your m spike as seen by the SPE - but I don't think i had that shown when they did my FLC. They did a immunoglobin assay that showed my IgA, IgG and IgM all within normal levels and totalling just under 15 g/L.  I also have a very high CRP level 41.7 mg/L it says should be under 8.  Anyways my question is this - does this mean I don't have an M-spike? Or the test wasn't done? Can you have a abnormal ration and not have an mspike? I was told by a very knowledgable person on here that the test should have shown a graph on my results - I am now understanding this a bit more so think my conclusion is correct that the test to show the mspike wasn't ordered. Just a little background - my first hema did the test but sent me to my family dr for follow up and then dismissed me as going thru early menopause without seeing the results of the FLC and my family dr has now retired - my new dr said this is a result that needs to be followed up and hence why I am going to a new hema.

As I said I see my dr on Friday (week today) and am just trying to get my questions organized and prepare better. I have also had a positive gallium scan for abnormal bone marrow activity but no BMT yet.

thanks for any replies

Keep us posted. I wish you both all the best.

Quincy

Hi Amy - was wondering - has you husband seen the the hema/oncologist yet? Did he get a diagnosis? My thoughts are with you and hope for the best.

I see my hema/oncologist Oct 26 - similar to your hubby over  a year of not feeling well (night sweats and fevers too)and finally an abnormal lamda/kappa ratio and other blood work that has continuously come back abnormal and they have mentioned MM to me as well. I also wonder - what else could cause these bloodwork to be out of whack. First they blamed early menopause (I'm 41)- but now with these proteins they are taking it more serious.

All the best,

Quincy

i don't have any answers sorry - but wanted to let you know I too just had a FLC test and got a high ratio - mine was 2.4 and had a high Kappa level. My SPEP came back basicaly normal. My dr is sending me to a hematologist - go Oct 26. I have had a history of unexplained fever, night sweats, fatigue and generally not feeling well and gone through several tests. my new GP was very concerned about this ratio and said it is nothing to be ignored. He mentioned MM to me as well as getting a bone marrow biopsy. good luck to you - will post what my hema says.

i just got the appt to my new hematologist appt - after finding abnormal FLC levels - my lamda/kappa ratio was high. Along with several other symptoms. They indicated this could be monoclonal gammapathy. Was wondering of any advice of questions I should be asking this new hematologist?

I finally met my new family dr today. I am pleased with his decision that my last blood tests need follow up and that he feels I need a 'better" hematologist - his exact words. He said an abnormal lambda/kappa ratio is not something to be ignored and usually used as a marker for MM. He wants to review my entire chart over the next couple of days and will get back to me but based on our initial conversation today he feels its something to be looked into and is surprised it took so long for them to do the FLC blood test. He also pointed out to abnormal globlulin levels from over a year ago should have been investigated. he also said my FLC test wasn't complete as there were some results missing. He wants to review all the tests I have done so far and what needs to be done. I am relieved he didn't brush me off and validated that these results show something is wrong and needs further follow up.

Is this available in printed format anywhere?

Thanks for your reply. I am meeting my new GP soon - and will discuss all with him. He is young so hopefully he is up to speed on this new FLC test. My old dr recommends him highly and says he is well connected to many specialists. While I don't want to dwell on the what if's I do want to figure out what is wrong so I can at least try to treat the symptoms or the condition and not get dismissed (I had one dr who said loose weight and take tyelenol for the fevers) which can be so frustrating as I had several times where I felt so awful and exhausted. 2 years ago I was an active 39 year old who worked out 3-4 times a week and kept up with my 3 kids - swimming, biking etc. Now I barely go to work (work from home mostly) and am exhausted all the time.  I'll see what my new GP suggests - and yes will accept the fact if he thinks its just a watch and wait attitude. I just find it funny that they say this MGUS is not symptomatic yet reading from others who have this have several of the same symptoms I am experiencing. Thanks again! Will post if I get any updates.

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