not looking good- Saturday update
lisa42
Member Posts: 3,625 Member
Hi,
Many of you know I've been on Dr. Cantrell's treatment of interferon and Lovastatin since mid December. I'm due for my next PET/CT scan on Dec. 10th (I had said before the 12th, but it just got moved up to the 10th). I've been getting bloodwork done with a CEA every couple of weeks. Just got my bloodwork results back last night from the blood draw Wednesday- Dr. Cantrell called me at home last evening with them. My CEA is now up to 96.4 from 64 two weeks ago. It was at 18 when I started the treatment in December.
Since CEA has always been a reliable indicator for me, this isn't looking good. Looks like this treatment isn't working. Dr. Cantrell said with those numbers, he's expecting the scan will show cancerous growth. He still wants me to come in for my appt. on the 17th this month, but I really don't see what the point is. I'll wait until after I get my scan results to cancel or not, though. I'll go to the hospital records room the day after my scan like I always do and request the report there. It'd take longer if I waited for my onc to review the scan report and get results to me. No waiting for me!
I mentioned to Dr. Cantrell that I might cancel the appt, as it would be close to $700 for me with the appt., airline tickets, and rental car. He still was urging me to come and keep the appt, and said there would be lots more for us to discuss as other possibilities. I don't know what to do.
Another onc that I have consulted with a few times before at UCSD had contacted my regular onc about the same time I was starting Dr. Cantrell's treatment to let him know that he has a clinical trial that I might qualify for. So, I called him yesterday and his asst. called me back saying the trial is still there as a possibility for me. I forgot to write down what it was called, though. It's an agent that has some similar qualities to irinotecan but supposedly has less side effects. One of the requirements for the trial is that the subjects had to have disease advancement while on irinotecan, which I did. I'm sure there are more specific requirements that I'd have to check out too. I'm hoping to talk to my regular onc about it and see if he has any ideas. He's never had any ideas for me. I just liked him because he was open to my ideas of doing alternative treatments. He's never called me at home- just his dumb nurse calls and then she usually takes a couple of days to call me. I already have an appt. set up w/ him on the 22nd, but now w/ the new info. that this treatment isn't working (based on the CEA- we'll see what the actual scan shows), I'd really like to talk to him sooner than the 22nd. He's going to be out of town soon going to the big colorectal cancer conference in Orlando, which probably most oncologists will be attending.
Ok- now I'm rambling, but in addition to the lousy CEA news, I've had another problem... my blood pressure has been sky high lately. Yesterday it was 170/106 and that was after I took an extra Atenolol for the blood pressure. I called my internist's office and the soonest they can get me in is Feb. 9th. They didn't act real concerned. I'm out of breath all the time, very weak- just going up my stairs makes my muscles quivery and tired, I have a headache most of the time, and I'm worried if I over exert myself, that I'll just keel over on the spot. I asked Dr. Cantrell if the high blood pressure could be related to the interferon or lovastatin and he didn't think so.
I'm trying hard to not overreact and stress myself out even more. I'm sure the blood pressure issue will get solved soon and I imagine there are other treatments for me for the cancer, if I can just fine one and get going on it before too much more damage is done by growing/spreading disease.
Lisa
Okay, now I'm rambling- venting too.
______________________________________________
Update on Saturday: Thank you everyone for your input, comments, and prayers! I ended up going into ER about 5 p.m. yesterday because of the blood pressure and muscle weakness. I was there until 10:30 p.m. and then released. They did a chest xray, which showed absolutely nothing- I didn't expect it to because my numerous lung tumors have all been under a centimeter. I guess the only good info to come out of the xray was that my tumors must not have grown past the centimeter point, or they would have shown up. They didn't do a CT. I had been having some chest pain, which is why they took the xray. I also have mild asthma, so it may have even been that. I was given an EKG right away and that came back normal. Next, they drew blood and all my bloodwork was normal, except my potassium was a little low and they gave me something for that. The whole time I was there I had a horrible headache. I was given two Tylenol for that, but they never gave me anything for the high blood pressure. When I went in it was 179/106 and by the time I left it was down to 145/91. Still high but not dangerous. It just went down on its own- they never gave me anything for it. Basically, they just told me to follow up with my doctor in the next couple of days. Well, this a.m. I woke up with the headache, which started pulsating more into a migraine. I took an Imitrex for the migraine, which apparently made my blood pressure go up again. Right now as I type, it's 174/113. I just took another Atenolol for blood pressure and will check it again in a little bit. I'm not going to go into ER again, though- they ruled things out, but they didn't do anything at all to make the bp go down. I feel like ER still wouldn't do anything for it if I went in today with it being higher- I'd just be tortured with waiting, lots of noise and confusion, and being made to freeze (their dumb thin blankets aren't warm enough!)
I was due for another interferon shot last night, but did not take it. I think that along with the muscle weakness, it may have been caused from the interferon and/or the Lovastatin. By muscle weakness, I mean that just walking up my stairs makes me feel like I've been exercising strenuously.
I'm just going to lay low today and rest in bed. I'll keep checking the b.p.
Gotta go- my left eye is pulsating- I need to close it and try to rest.
Lisa
Many of you know I've been on Dr. Cantrell's treatment of interferon and Lovastatin since mid December. I'm due for my next PET/CT scan on Dec. 10th (I had said before the 12th, but it just got moved up to the 10th). I've been getting bloodwork done with a CEA every couple of weeks. Just got my bloodwork results back last night from the blood draw Wednesday- Dr. Cantrell called me at home last evening with them. My CEA is now up to 96.4 from 64 two weeks ago. It was at 18 when I started the treatment in December.
Since CEA has always been a reliable indicator for me, this isn't looking good. Looks like this treatment isn't working. Dr. Cantrell said with those numbers, he's expecting the scan will show cancerous growth. He still wants me to come in for my appt. on the 17th this month, but I really don't see what the point is. I'll wait until after I get my scan results to cancel or not, though. I'll go to the hospital records room the day after my scan like I always do and request the report there. It'd take longer if I waited for my onc to review the scan report and get results to me. No waiting for me!
I mentioned to Dr. Cantrell that I might cancel the appt, as it would be close to $700 for me with the appt., airline tickets, and rental car. He still was urging me to come and keep the appt, and said there would be lots more for us to discuss as other possibilities. I don't know what to do.
Another onc that I have consulted with a few times before at UCSD had contacted my regular onc about the same time I was starting Dr. Cantrell's treatment to let him know that he has a clinical trial that I might qualify for. So, I called him yesterday and his asst. called me back saying the trial is still there as a possibility for me. I forgot to write down what it was called, though. It's an agent that has some similar qualities to irinotecan but supposedly has less side effects. One of the requirements for the trial is that the subjects had to have disease advancement while on irinotecan, which I did. I'm sure there are more specific requirements that I'd have to check out too. I'm hoping to talk to my regular onc about it and see if he has any ideas. He's never had any ideas for me. I just liked him because he was open to my ideas of doing alternative treatments. He's never called me at home- just his dumb nurse calls and then she usually takes a couple of days to call me. I already have an appt. set up w/ him on the 22nd, but now w/ the new info. that this treatment isn't working (based on the CEA- we'll see what the actual scan shows), I'd really like to talk to him sooner than the 22nd. He's going to be out of town soon going to the big colorectal cancer conference in Orlando, which probably most oncologists will be attending.
Ok- now I'm rambling, but in addition to the lousy CEA news, I've had another problem... my blood pressure has been sky high lately. Yesterday it was 170/106 and that was after I took an extra Atenolol for the blood pressure. I called my internist's office and the soonest they can get me in is Feb. 9th. They didn't act real concerned. I'm out of breath all the time, very weak- just going up my stairs makes my muscles quivery and tired, I have a headache most of the time, and I'm worried if I over exert myself, that I'll just keel over on the spot. I asked Dr. Cantrell if the high blood pressure could be related to the interferon or lovastatin and he didn't think so.
I'm trying hard to not overreact and stress myself out even more. I'm sure the blood pressure issue will get solved soon and I imagine there are other treatments for me for the cancer, if I can just fine one and get going on it before too much more damage is done by growing/spreading disease.
Lisa
Okay, now I'm rambling- venting too.
______________________________________________
Update on Saturday: Thank you everyone for your input, comments, and prayers! I ended up going into ER about 5 p.m. yesterday because of the blood pressure and muscle weakness. I was there until 10:30 p.m. and then released. They did a chest xray, which showed absolutely nothing- I didn't expect it to because my numerous lung tumors have all been under a centimeter. I guess the only good info to come out of the xray was that my tumors must not have grown past the centimeter point, or they would have shown up. They didn't do a CT. I had been having some chest pain, which is why they took the xray. I also have mild asthma, so it may have even been that. I was given an EKG right away and that came back normal. Next, they drew blood and all my bloodwork was normal, except my potassium was a little low and they gave me something for that. The whole time I was there I had a horrible headache. I was given two Tylenol for that, but they never gave me anything for the high blood pressure. When I went in it was 179/106 and by the time I left it was down to 145/91. Still high but not dangerous. It just went down on its own- they never gave me anything for it. Basically, they just told me to follow up with my doctor in the next couple of days. Well, this a.m. I woke up with the headache, which started pulsating more into a migraine. I took an Imitrex for the migraine, which apparently made my blood pressure go up again. Right now as I type, it's 174/113. I just took another Atenolol for blood pressure and will check it again in a little bit. I'm not going to go into ER again, though- they ruled things out, but they didn't do anything at all to make the bp go down. I feel like ER still wouldn't do anything for it if I went in today with it being higher- I'd just be tortured with waiting, lots of noise and confusion, and being made to freeze (their dumb thin blankets aren't warm enough!)
I was due for another interferon shot last night, but did not take it. I think that along with the muscle weakness, it may have been caused from the interferon and/or the Lovastatin. By muscle weakness, I mean that just walking up my stairs makes me feel like I've been exercising strenuously.
I'm just going to lay low today and rest in bed. I'll keep checking the b.p.
Gotta go- my left eye is pulsating- I need to close it and try to rest.
Lisa
0
Comments
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Lisa42
Did any of the medical people you talked to about your blood presure being that high seem to think it was an emergency for you to be looked at ASAP. Hell I'd go to the ER if it gets any higher . Your head ache is because of the bp being so high as is all the other symptons you are having I would go lay down and try to clam down and retake my bp and if it hadn't gone down I would go to the ER...you need to come to Oklahoma sweetie I have a great team here...
Louann0 -
good advicelcarper2 said:Lisa42
Did any of the medical people you talked to about your blood presure being that high seem to think it was an emergency for you to be looked at ASAP. Hell I'd go to the ER if it gets any higher . Your head ache is because of the bp being so high as is all the other symptons you are having I would go lay down and try to clam down and retake my bp and if it hadn't gone down I would go to the ER...you need to come to Oklahoma sweetie I have a great team here...
Louann
I think I'll go take my bp again right now, then call and specifically ask the Dr.'s office how high does it need to be to be considered an emergency?
This morning it was a little lower- it was 147/95. Still high, but not like yesterday. I feel so out of breath still and my ears feel like they're burning. I know it's from the blood pressure.0 -
lisa42lisa42 said:good advice
I think I'll go take my bp again right now, then call and specifically ask the Dr.'s office how high does it need to be to be considered an emergency?
This morning it was a little lower- it was 147/95. Still high, but not like yesterday. I feel so out of breath still and my ears feel like they're burning. I know it's from the blood pressure.
I am not a nurse or doctor but my mother had high bp and they said when the two numbers run together it is called pulse presure and she could have a stroke so please don't take any chances...0 -
just googled blood pressure emergencylcarper2 said:lisa42
I am not a nurse or doctor but my mother had high bp and they said when the two numbers run together it is called pulse presure and she could have a stroke so please don't take any chances...
I just googled blood pressure emergency. Two different sites said a blood pressure of 180/120 is considered an emergency. Mine hasn't been that high, but I will monitor it carefully and will still call my Dr.'s office back.
As if I didn't have enough to worry about already & worrying will just make the bp even worse!0 -
lisa42lisa42 said:just googled blood pressure emergency
I just googled blood pressure emergency. Two different sites said a blood pressure of 180/120 is considered an emergency. Mine hasn't been that high, but I will monitor it carefully and will still call my Dr.'s office back.
As if I didn't have enough to worry about already & worrying will just make the bp even worse!
Try to relax ,I know that is hard I am the worlds worse worrier but you are on top of it anyway ...0 -
Bad news
I'm so sorry, Lisa. I wish there was some ready solution to all of this, and i wish your doctors would be faster in their responses. I've found the medical industry to be so exasperating. I was surprised when Dr. Fanta told me yesterday to stray as far away from the Western diet as possible!
Have you talked more in depth with Lisa P.? I think you should PM her, and find out exactly what she did to rid herself of cancer. I truly believe we can cure ourselves better than this traditional medicine crap. As far as your family's acceptance of a new lifestyle is concerned, like Emily said in another post, they'll just have to get over themselves and consider the alternative. This is to save your life. If that means eating tofu and celery for the next two years, so be it. They'll be thanking you full board when the cancer disappears.
I think about you every day, Lisa, and pray the cancer just vanishes. It's happened to others, so why not you?
If you need any help in motivation for a severe diet change, i'm here for you. I'm going the soft mechanical and liquid diet route, so i'm right there with you.
Hugs, hugs, hugs!
Krista0 -
Oh my sweet, sweet friend....
I'm so sorry to hear this. I really was expecting good news.
I posted a link for you on Facebook so as not to insult anyone here.
Love you, sweet sister,
Diane0 -
So sorry
Lisa, I am so sorry that the treatments don't seem to be working. It sounds like the clinical trial is something to look at more carefully. The onc who called to let you know about it might be a winner...after all your health is in his thoughts.
About the bp...with the symptoms you are having and your overall health issues, I wouldn't put off going to ER if it doesn't come back under control. Taking extra meds to control it is only a stop gap. Maybe you need a night in the hospital under some anti stress meds and general overall care. After all, you just had some news which would give anyone anxiety.
Hope you get the bp under control quickly and that the clinical trial or something new out there will give you the boost you need physically and emotionally.
Take care...
Marie0 -
Lisa42
I was hoping Dr. Cantrell's treatment would work for you! I am looking myself for treatment options. I know you have seen alot of the same people my sister has. Was Lenz of no use? he seems to have many clinical trials. I pray there is something coming down the pipeline that offers a chance for those that other treatment options did not work. I do believe you need to be your own advocate and no doctor I have met is going to call on their own, just to check in. Jaded I know.
Keeping you in my prayers.0 -
Lisa
I hear the sadness and exasperation in your words - I'm sorry that it does not look like it is working - the CT scan results should bring this picture in clearer.
For your BP, over 200 can be a stroke at any moment! I saw you post 180 was an emergency and it sure is - I had it that high one time in the hospital when they left me off my meds after surgery. But 200 is stroke level. Undoubtedly this is causing the headaches and out of breath. 147 is bwetter but you are right to watch it.
Would be nice if Canctrell could give you a phone consult and save you all that money. Doctors just don't get it when we tell them we're "tapped" and we're "hurting for $."
You've always been so strong minded and I believe you've done the right things that you can do in your treatment. I am hoping for another avenue to pursue that can change the course of this disease.
Just a thought? Could this treatment you are doing be killing come cancer cells? The reason I ask is because when cancer cells die off, they emit some kind of protein and the CEA level can rise accordingly. A question to throw at them anyway - but this comes to mind.
I'm pulling for you Lisa - your strength and grace inspires so many here and there are many who look to you for hope. Count me in as well.
-Craig0 -
Lisa, agree with craigSundanceh said:
Lisa
I hear the sadness and exasperation in your words - I'm sorry that it does not look like it is working - the CT scan results should bring this picture in clearer.
For your BP, over 200 can be a stroke at any moment! I saw you post 180 was an emergency and it sure is - I had it that high one time in the hospital when they left me off my meds after surgery. But 200 is stroke level. Undoubtedly this is causing the headaches and out of breath. 147 is bwetter but you are right to watch it.
Would be nice if Canctrell could give you a phone consult and save you all that money. Doctors just don't get it when we tell them we're "tapped" and we're "hurting for $."
You've always been so strong minded and I believe you've done the right things that you can do in your treatment. I am hoping for another avenue to pursue that can change the course of this disease.
Just a thought? Could this treatment you are doing be killing come cancer cells? The reason I ask is because when cancer cells die off, they emit some kind of protein and the CEA level can rise accordingly. A question to throw at them anyway - but this comes to mind.
I'm pulling for you Lisa - your strength and grace inspires so many here and there are many who look to you for hope. Count me in as well.
-Craig
Lisa, i agree with craig, some times CEA level rise for other reasons not just a bad sign, mine have always been low and not been an indicator of anything for me, I would go on how you feel, and try hard to just let yourself relax, do what you like,a little lite exersise, and talk to a good listener let it all out, and check your own BP, High BP readings at the Doc offices are common,
take care of yourself
Live,laugh,play
Penny0 -
Hanging with you
I'm so sorry to hear this news Lisa. I was so hoping this would be the trick for you. It sounds like the clinical trial would be something to try. I also agree with folks about the concern for high blood pressure. Many of the chemo drugs we take, like Avastin, can affect the heart which can affect BP. Please don't wait to long to deal with this more immediate concern.
lots of love and care, Leslie0 -
Clinical trials?
Lisa42, I'm very sorry to hear about the lack of response to Dr. Cantrell's treatment regimen. If I were you I would look into all sorts of clinical trials. You may want to ask Dr. Lenz at USC about trials related to cancer stem cells. I thought he was trying to get a trial started using something called ICG-001, a drug that inhibits the WNT pathway and causes cell differentiation. For these reasons, it may work well in drug resistant cases. There may be PARP inhibitor trials you can enroll in as well.
You have been so strong throughout your treatment. I'm sure you will find something.
Jeremy0 -
Lisa -
Lisa -
I posted a link on another thread regarding CEA. The numbers can
escalate greatly, when a lot of cancer cells die at once. I would
keep that in mind!
Second.... High blood pressure is a symptom of an underlying
problem. Drugs and the interaction of various medicines can
trigger high blood pressure as well.
When my wife had a ruptured cerebral aneurysm clipped, her
surgeon put her on a medication to elevate her blood pressure
well beyond the reading you're seeing. He stressed to me, that
high blood pressure does not cause aneurysms, strokes, or
heart attacks; those things occur to people with normal pressure,
and most often while sleeping, ruling out mental stress, as well.
(A stroke is when part of the brain does not get sufficient blood)
He had added that it rarely if ever, dislodges plaque, or causes
any other problem, but sustained, long-term high blood pressure
that goes unresolved usually will lead to to other complications,
but it is usually due to the underlying cause of the high blood pressure.
That's much the same as having a fever; if you take medications to
lower your temperature, the cause of it would continue on. An
infection would grow to be overwhelming amount.
Lowering the temperature is important, since a sustained high
temperature can cause other damage..... and in that respect,
high blood pressure should be treated with the same concern.
I noted also, that any symptom that goes unresolved too long, will
cause more severe problems. Taking blood pressure medications
only takes away the symptom, not the cause of the high blood pressure.
So many people fail to realize that!
With the numbers as close together as you are seeing, I would be
concerned, but not panicked. If your physician was not concerned
enough to tell you to go to the ER, I might take that as a good sign.
You could call the ER and tell them your concerns, if they think
it's dangerous, they'll tell you..
I don't know if any of that helps, or just confuses things?
I guess the bottom line is, if my doctor isn't worried about losing
lucrative business if I die, I wouldn't be worried about dying.
(ha)
Stay well!
John0 -
Hi Lisa I am so sorry to
Hi Lisa I am so sorry to hear about your CEA levels. I hope it is just the because of the dead cells and that the scan would show no tumors. My husband's situation is similar to yours. We also went to Dr. Cantrell and was going to start on Feb. 18th but the scan my husband had on Tuesday showed no tumors so I do not think we would be going. He also was on folfiri and I think that it is why it returned. However, he went on Zeloda, Avastin and oxyaliplatin for the last three months and that took care of the tumors. Did your Onc. talk about going back on folfox or zeloda. I think that really works. You like all the others on this forum are always on my thoughts. I do not post a lot but I read what you all write and my heart goes out to each and every one of you all because the caregiver has a very good idea of what you all are going through.0 -
Kershakersha said:Hi Lisa I am so sorry to
Hi Lisa I am so sorry to hear about your CEA levels. I hope it is just the because of the dead cells and that the scan would show no tumors. My husband's situation is similar to yours. We also went to Dr. Cantrell and was going to start on Feb. 18th but the scan my husband had on Tuesday showed no tumors so I do not think we would be going. He also was on folfiri and I think that it is why it returned. However, he went on Zeloda, Avastin and oxyaliplatin for the last three months and that took care of the tumors. Did your Onc. talk about going back on folfox or zeloda. I think that really works. You like all the others on this forum are always on my thoughts. I do not post a lot but I read what you all write and my heart goes out to each and every one of you all because the caregiver has a very good idea of what you all are going through.
If you click on Lisa's name under her picture, you can read all the meds she's tried that have not worked. :-(0 -
Wish I knew of something to say
Lisa, For the first time in a L-O-N-G time I'm lost for words. If you ever just want to get out of the house PLEASE PM me and we can do luch and maybe take a walk on the O'Side Peir. I'm open to anything to help you. Maybe I can cook you guys dinner and drop it by? I hear I'm a heck of a cook!! LOL...
Brooks0
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