Tumor Markers

[rachelqt]

Hi Everyone

Has anybody any information or views on Tumor Markers(CA19-9)? The reason im asking is because Dad has just finished his first cycle of chemo. He then returned for the first of his 2nd cycle on Thursday past. He went in for his usual meeting with his Oncologist. We then had a different oncologist that day as his usual one was off. The oncologist went over the usual things and was happy for dad to go for his chemo. The nurse who is always with us in these meetings followed us down to book dad in for the chemo (something she has never done before) and told us that dads markers were down after his first cycle from 6o.something to 50.something (forget what she had said at the time) She said that that was very good and didnt understand why the stand in oncologist didnt tell us this.

Anyway my dad has been in top form and has had tonnes of energy on his first week off and also 3 days into this cycle. He usually goes for naps and feels a little nausious from time to time. But he has had no naps for the last 2 days!

Dad said tonight that he wonders the reason he has had more energy this late maybe to do with the tumor shrinking. The news has given him a great boost but are we getting excited over nothing. I do know the proof will be in the scan but how much can you rely on these markers?

Thanks...Rachel xx

[louiepc]

Oh hunny, it sounds positive doesn't it? I don't know anything about markers etc, so cannot give you any advice/information, but fingers crossed, you get some positive news.

I hope you are well, and coping ok? Think about you a lot.

take care

louie xxx

[rachelqt]

Ah thanks Louie, I just seen your post tonight about your mum and truly my heart goes out to you. Its all just so so sad. Im always here if you need to chat, shout or cry. xx

[lynbo]

Hi

I know Jeni will have some answers on this, maybe email her, or she may read this and reply?

It sounds positive, also Nicki may know? Nicki & Ted ? She's very clued up

Xxxxx

[Nardobd]

Hi Rachel

The tumor markers are proteins in the blood which are indicative of having a tumour but a raised count can also be caused by other issues, such as inflamation or pancreatitis.

Some people (including Ted) find that the markers run very closely with their scans and they can be used as an indication of what's going on. Others have a very different experience and the marker levels, whilst a rough guide, aren't particularly helpful.

The best way to think of the CA19-9 is as one of a number of tools to guage how Dad is doing. Other things include how well your Dad is feeling in himself, whether there is any change in the pain/tiredness etc and, of course, scans.

Having said all that, any reduction in the CA19-9 is good news and the fact that your Dad is feeling so well seems to back up the fact that the marker is reducing. Keep a track of the marker over the next few months (most hospitals do a CA19-9 about once a month) and hopefully it will continue to slide!

Nicki

[lynbo]

Thanks Nicki

Knew you would help - hope things are ok with Ted and yourself

Xxx

[rachelqt]

Hi Nicki,

Thanks very much for your reply it has made it easier for me to comprehend the whole marker subject. Dad is still feeling good and has bags of energy. Im hoping the markers are a good indication that the treatment is working well for him.

Thanks again and hope you and Ted are well..Rachel x

[rachelqt]

Hi Everyone,

Im back again to ask if anyone can give me information on these Tumor Markers (sorry!)

Dad was back again today for his Cycle 3 Day 15 of treatment which is half hour infusion of Gemcitabine and having managable side effects.

The oncologist has informed us that his tumor markers have come down really well, so after Cycle 4 they will scan him and if the scan ties in with the fall in markers, they will give him a break from the chemo. This is all very promising and we are very happy but am I ignorant for thinking this; Would a break in chemo not give the tumor time to grow again? Why not keep going while the goings good?

Im usually with my dad every week but today I could not make it, so I could not ask questions myself.

Thanks for your help

Rachel xx

[PCUK Nurse Jeni]

Hi Rachel,

This is good news indeed. Ca 19.9 is the tumour marker measured in most GI cancers, including pancreatic cancer. The blood test is done as an "at a glance" indicator of how the treatment is working. It is something which is simple to do, and gives the care team an indicator of how the cancer is responding to the treatment. Tumour markers are released when there is activity within the cancer, so when they reduce, it means that the chemo is affecting it in the right way!

However, they are not a "stand alone" test, and one of the most important assessments in patients undergoing chemotherapy is the clinical examination of the patient: how they are feeling, are they eating, any pain issues, and has this improved since going on chemo, are they putting on weight, other symptoms improving ie: nausea, less tired, able to get out and about, or do something they could not do before they started chemo ie: take a walk. All of this contributes to the clinical picture, and can give the oncologist a good idea of how things are going. On top of this, there will be regular CT scanning. Often this is done after 3 cycles of chemo, in the case of gemcitabine. (ie: after 3 months) This enables the team to see if there is shrinkage in the tumour, or if it has NOT GROWN (also a positive response), and to decide whether to continue with chemo or not. For example, if a person was scanned after 3 months, and it showed that the disease had grown, then there would be no point in carrying on with the same chemo, as it had failed to work. Similarly, if it shows good results, they may continue with chemo. I must admit, it is usual to have a 6 month course of gemcitabine for PC. I am not sure as to why they would want to give your dad a break? You must ask this. Has your dad really struggled with side effects from chemo? If so, that may be a reason for it. If not, then it would be good to find out the rationale for the break, and what would happen if your dad needed more treatment? Would they reintroduce the same chemo? Sometimes the tumour will start to grow again when the chemo is withdrawn. You would be assessed regularly, I would guess, and blood tests done. Also, asking about whether symptoms had come back or not.

Would your dad want a break? Or would he be OK to carry on? Perhaps they may take his thoughts into consideration also? I think it is reasonable to ask for another 3 months, especially if it has done a good job.

Hope this helps?

Jeni.

[rachelqt]

Hi Jeni

Thankyou for your reply, its a great help. Yes we are very pleased with the outcome so far! The plan was a 6 month course of Gemcitabine with a scan at 3 months. Now they want to wait until 4 months? Since my dad has started the chemo he has put back on a stone in weight, eats very well(almost back to his old eating habits), he looks pink again and has the energy to paint a bedroom at home! He is lucky as he has no pain, even before Chemo. Although he does get days where he will be tired and he just has to take it easy. So he would have no problem to carry one with the treatment.

I was a bit miffed myself when dad told me this today. He has his week off now, so when we return I will ask these questions!

Thanks again...

Rachel x

[laura]

hello racheal, my hubby bri is also on a break from chemo, nothing since 2nd wk in nov. although he had had 19 cycles of gemcap [trial] was 6 months originally with scan every 12 weeks, shrinkage shown after 12th and 24th week, since then stability.

we have a scan booked for feb 7th [ 2 yrs from date of diagnosis] and see our oncology team 23rd feb. [ everything crossed ]

it was a suggestion from our specialist to consider a break after such a hefty input, of poisons really, it took bri 2 months to decide to give it a go, we were told any problems to go back to clinic, we havent had to, and then depending on results of scan see where we go, the options mentioned were, back on for a burst of gemcap, or radiotherapy, no indepth discussion because the scan results were needed to make any kind of informed decision.

its only this last 3 to 4 weeks that bri has really picked up from the tiredness, had always done short mat bowling but tiredness was a problem our macmillan nurse visited today and was pleased with how he looks, although not enjoying food much at present, unfortunately bri also has a brain problem m.c.i. this produces as much, if not more stress than the cancer at times, never asked about ca19 markers, but will do on our next visit.

gosh ive rambled a bit here !! sorry, hope all goes well , love laurax

[Drew]

Sounds like good news for your dad Rachel and for bri Laura.

Fingers crossed they both continue to get stronger and have a chance to beat this.

Markers have never been mentioned during Heathers treatments, so that was all new info for me, but good to know. Heather has been fighting this from her whipple operation back in April last year and I thought I was well clued up on the disease , but this site has showen me how very different each persons symptoms and treatments can be.

Long may your luck continue

Drew

[louiepc]

Ooh Rachel this sounds so positive.

Mum never had markers mentioned either. Hopefully, a scan will show really promising results. I think I would feel concerned about stopping the chemo just yet though, if it's done this good a job, may as well have a few more sessions of it heh?

Laura I can't believe your Bri is nearly on the 2 year mark - goodness me there is some hope for people out there then.

louie x

[rachelqt]

Hi Everyone

Laura thanks for your reply, funny enough I always look out on this site for you, as I like to hear how Bri is doing as he is hope to us all here! I pray my dad goes in the same direction! Im sorry Bri has other health issues to contend with while fighting this horrible disease. I hope he continues his good fight!

Drew, I hope Heather is keeping as well as she can be. Suppose the main thing is that she is pain free. I had time today to look at the clinic in Belfast, it sounds intriguing but I also thought where is the proof with it? As you say this PC is so individual. In september dad was so ill, I thought he was on a downward spiral but he is doing good now and im very grateful for that. It just frighten as you dont now what is around the coner.

Louie hope your keeping well, its tough times for you. Im sure your mum will have a beautiful send off and I will be thinking of you...xxxx

[laura]

hi rachel, just wondered how dads doin ? any decision on whether he can carry on to 6mth mark? how are you ? i know how draining this disease is for "the other person" bri refers to his tumour as his "passenger!" (bit miffed sometime having an unpaying uninvited guest] LOL , bris doin well at the mo, been putting up a 10x8 metal shed, for his antique tools, [not me] to go in, so hes well motivated and quite happy with having a project in hand.

yesterday i treated myself to a full body massage at our local college, it was "BLISS" perhaps some of you could consider something similar? booked in again for next week,

louie also thinking about you and how you are managing ? try and take care of you xx

any more news on dads tumour markers rachael?

sorry if some of this post seems a bit of trivea, dont mean to upset anyone, honest.

take care all of you love lauraxxx

[dmc236]

its not trivia Laura, its realy good to hear that things are settled and managable for you. positive posts are allways helpfull and keep me positive too.

[rachelqt]

Hi Laura,

No more word yet on dads treatment. He is doing very well at present and its more than we could have hoped for!! He is on his week off, were back this coming Thursday so I shall be quizing the oncologist then! Although I have been in contact with another oncologist (friend of a friend) who seems to think that a break can be good as it stops the cancer cell becoming immune to the chemotherapy? Dads markers have dropped quite a lot so maybe this is the reason? We should have our first scan hopefully at the beginning of March to see what my dads passenger is doing..lol Hopefully its decided to hop off!!

Laura im so pleased that Bri is doing well. Seems his break is doing him the world of good, and he (hopefully my dad too) is a message of Hope to all the PC suffers out there. Im also delighted that you are having a bit of 'ME' time! Thats so important. Wish my mum could do the same, sadly for her, her mum (my nan) passed away on yesterday and she is also coming to terms with dads illness. She has been on an emotional rollercoster of late. I would love to take all the saddness away from her.

Chat soon Laura and keep us posted on Bri

Love Rachel xx

[laura]

hello rachel,, sorry that your mum has lost her mum, your nan, another blow to deal with, isnt it a good job we dont know whats round the corner cause i think most of us would just want to run run run, not knowing just makes us deal with whatever gets thrown at us, my mum who lived till 95, been gone 18 years now, always told me my shoulders would always be broad enough to deal with whatever !!!, dont want too many more problems else i shant get through the door?? lol

perhaps you and your mum could go and do something together, my daughter [49] comes with me for a massage, its nice for both of us,

take care chat soon love laura xxx

[PCUK Nurse Jeni]

Hi Laura,

I just want to echo what dmc etc...have said. Your posts are such a source of hope to all on here, and it is lovely for people to hear that Bri is doing some projects, even strenuous ones like building a shed!! I think also that it helps people to see that there is life after chemo (in particular), and that some semblance of "normality" is possible.

I also think it was a great idea to suggest the body massages to the people on the forums. (Actually had a back massage myself for the first time last week!) I think these are good ways to unwind, and think beyond cancer etc... even for a short time, and to have something which will make the person feel better too.

So, keep on posting! Everyone on here loves to read your posts, and your news, and of course, your sense of humour!!

Best wishes,

Jeni.

[laura]

aw jeni, thanks for your lovely comments, lifes a bit "poo" at times, and i try and be a bit lighthearted, just so that you all dont think cause bris doing ok, alls well, i do have another daughter up country [47] who is a recovering [ i hope] drug addict and still has some probs with drink, she has two children, see what i mean about my mums "quote" [bless her]

anyway to all of you on here, no one knows what heartache goes on behind a smile, or closed doors, do they? its as loipec says, everyone else seems to be going about their business without a care in the world, whilst others feel their hearts are being ripped out.

we never know do we?

so, chins up, keep fighting and positive, lots love laura xxx

[rachelqt]

Hi...

Just an update on Dads situation with his treatment. Were still in limbo at the minute as to what is happening. Dad is still keeping well and just had cycle 4 day 8 over him. The oncologist is still making the decision as to whether to stop the chemo at 4 months or keep going until the 6 month mark. We are just being told to see how things go over the coming weeks. He is not sure if he will even be given a scan just yet as the markers are a good indication. His CA19-9 is down from 6800 to 2400, but todays blood results were the first time Dad has not had a drop in the markers, Dad was told today that they were raised slightly but it was not even worth talking about. He was also told for the first time how pleased they were with his progress, his liver and bloods functions are all good!

Anybody know if its possible for a tumor to shrink off the vein that its wrapped around? (Dad was told he was inoperable) This is why I would love Dad to have a scan, just incase this was happening.

So far now we have to go with the flow.

Takecare everyone...Rachel

[laura]

hi rachel, nice to have you back on line, wondered how you were? bri's tumour was/is wrapped round the smv, this was NOT visible on his various scans pre-op, only when they opened him up and "laid all his bits out" that they could actually SEE the problem!

however the tumour did shrink by about 50/% over 6months, our gp did say he thought it was worth having another "pop" at the op, however oncologist thought that wasnt possible. the other side of that from what i have read/know is that there can be a lot of other different problems from having a "whipple". again as so often seems the case, its all down to whats on offer, and the sufferer's own choice, we feel that as bri is not suffering too many problems wth digestive side effects, perhaps better the devil we know! very aware that his "passenger" is still hitching a lift, but long may it remain a passive passenger?

all down now to waiting for result of scan we had this week, and see how hes done without 3 months of chemo [ bit scary]. best wishes to you and your dad rachel, and all other "posters" on here

love laura xx

[dmc236]

have everything crossd for you laura, that bri's scan shows positive results x

[rachelqt]

Hi Laura,..Yes back on line, me and my girls were in a vicious circle of tummy bugs and flus, thankfully we are all much better now, that time of year I suppose!

There seems to be no winning with this PC, as the operation seems like the only hope of cure but then again it does bring alot of complications with it and also there is that high chance of it coming back!

I hope the results of the scan is good for Bri, I can understand how nervous you both must feel, please let us know how he gets on. Will say a prayer for you both!!

Takecare..Rachel xx

[PCUK Nurse Jeni]

Hi Rachel,

It is possible , but not very common, for the tumour to shrink back off the vessels which it is wrapped around. If your dad has a scan, and there is a good sign of this, maybe they might consider giving him radiotherapy, to maybe help further with the shrinkage?

Again, this is not a common occurance, but worth asking?

Jeni.

Laura -hope the scan results are positive. Jeni.