How Do I Deal With an Unresponsive Oncologist

[testing765]

I was in the ER with a blood clot on 11/9/14. My next FOLFOX is scheduled for 11/17/14. Since I was released from the ER, my oncologist called me once, and I missed his call. I have called him back 4 times (twice today) since and asked for a return call. I have not heard from him. I am not scheduled to see the oncologist on 11/17/14, but rather a advanced practitioner nurse (APN). I want answers to the questions I have listed below, and I want the answers to come from the oncologist. When I called to request to see the oncologist before the 11/17/14 chemotherapy session, I was told that based on his schedule, I would not be able to address these questions with him prior to the chemotherapy treatment.

In this situation, what would you do? Accept the responses to the questions from the APN that I receive on 11/17/14? Reschedule the chemo session for a time when I can meet with the oncologist before the chemo session? Go forward with the chemo session on 11/17/14 even if I do not have answers to my questions prior to the chemo session? I know everyone is busy, but I feel like I went through a pretty serious situation at the ER and the oncologist does not seem concerned or responsive to it in any way.

Thank you for your feedback.

What caused clot: chemo; surgery; port?

Will I be ready for chemo this Monday?

Who monitors the clot situation? My oncologist? Interventional radiologist?

How will clot be monitored?

How common is a blood clot?

Can I die from this clot.

How long will I need to treat this?

When will I switch to coumadin or warfarin?

Will the pain subside?

I was prescribed 10 injections of enoxaparin sodium. will I need more.

I read that a blood clot can be a sign of metastatic cancer. True?

Why didn't anyone tell me about this possibility of clotting?

I understand some people have a medical disorder that causes clotting. Do you think I may have this?

[Kellie]

Maybe I can answer at least a few of your questions because of my recent similar experience. After getting my first round of this cycle of folfolri I felt terrible. Over the next 5 days I continued it get sicker and harder to breath. My oncologist's nurse told me to call 911 because I could have a bold clot.

They did find clots in my lungs that had broken off from the clot in my leg. I had 2 clots in one lung and 1 in the other. It's my understanding that most clots do start in the leg and this is not uncommon. As what caused it? I'm pretty sure you'll never know. It's been almost a year since my liver resection and this was my first round do chemo for this cyle, so chemo is probably my cause. They started me on lovenox (sp?) injections right away. I gave myself one shot in the morning and one in the evening 12 hours apart. This drug is suppose to be the best for cancer patients, but it is extremely expensive and Medicare doesn't cover it. Luckily I have good insurance.

The next day in the hospital the oncologist on call and a pulimaologist stopped by. They said these are fairly common to occur and as long as I was on the shots I should be good to go and was discharged. The shots and scripts are monitored by my oncologist. He just changed my script to once a day for the rest of my life. Apparently, if you stop with the shots, more clots will come.

I had my chemo on schedule and everything has been fine since the initial clots were discovered. No one seemed too worked up about the situation. The blood thinners keep the clots from moving and new clots from forming. Other than that, I don't think they do anything else. And as far I I know there is no test needed to monitor if the injections are working. I think that different with pills. Hope this helps.
Kellie

[esk2poo]

First off, I would not reschedule my chemo appointment if for some reason you do not get an appointment with your onc beforehand. I would call the office and be a real pain in the butt insisting that they get me in to see him some time the day of or before the appointment. At the same time, I would have all of my records together and make phone calls to set up another onc if he remains unresponsive.,
A blood clot is extremely serious. Mine was in my lower leg and there wasn't too much worry about it traveling anywheres that could have caused a life threatening situation but to have it right up where the port is going directly into the heart, understandable that he is busy but he needs to address your concerns and not just be some factory that pushes patients through his chairs at $9,000.00 a treatment.

As far as your questions: you had three strikes against you. I was told that getting chemo, having Cancer, and having a port all individually increase your risk of a blood clot and again, you have all three.

The clot itself really should not delay your session unless it is blocking the usefulness of the port and its ability to deliver the Chloe the way it should.

In my case, after the initial diagnosis and being sent home already with Coumadin, I had to go to my onc every week for him to check my INR level to make sure the medicine was working at its optimal level. Depending on the results, they would increase or decrease the dosage to keep it within a certain range. Don't remember exactly what that number was but they know.

As far as monitoring, there was none in my case. After 6 months of the Coumadin, I was sent for another ultrasound and it was determined that it had dissolved and I was taken off the medicine.

Clots are very common as described above with the things against you. Just do a search up top for either blood clots, DVT, or pulmonary embolism and I am sure you will get many pages to keep you busy reading.

Could you die? Chances are probably good now that you won't since you are getting treatment. If you didn't go to the hospital, there would have probably had the chance of it traveling somewhere bad and cause a major issue.

I was on the medicine 6 months and I was only injecting myself for the three days that I was in the hospital when I was diagnosed with it. When I was discharged, I went home with the prescription for the Coumadin. What were the discharge instructions? 10 injections would not have been enough to get you to the chemo session anyway. Did they say to call your onc right away to get an appointment to get him in the loop on it or did they tell you to follow up with another specialist? You need that appointment anyway so they can either write you an another prescription for the injections,or start on the Coumadin.

As the clot slowly starts to dissolve, the pain should subside. That's why you need an appointment to get a game plan in effect as far as scanning frequency to see if it dissipates, check the blood levels, and make sure everything else is going ok. There are probably over 1,000 different side effects or things that can happen with chemo and Cancer, I do not believe there is anyway they can tell you everything that could go wrong. At least with mine, they just addressed issues as they arose. Sometimes, I would explain something to him and he would look at me like I had 3 heads. I would then come here to the board and find out everyone here understood it and got it because they experienced it.

I wouldn't put too much into stock about the metastatic theory and clots. You'd have to look at the source of where you got that from and look at how many people on here got clots without any further spread.

And, in your 40 plus years of walking on this earth, have you ever had a blood clot before? Your body is going through some serious shit right now and I guess the clot was one way of getting even with you. I would bet that after this is all over, you will never get another clot in your life. I never did.

Be that squeeky wheel, call that office, and demand the follow up that you need to keep your treatment on course.

Good luck,
Allen

[testing765]

Hi Kellie:

Thank you for sharing your experience with me. It is helpful. Maybe I am overreacting a little bit, it's just that I have only been to an ER twice in my life before and my dad died from a stroke, so when I heard that I have a clot, it freaked me out a little bit.

[arizona mom]

Hi,

I don't know if I can answer your questions, but I am also being treated for blood clots. They were found during my one month post surgery ct scan in August and were also around my port. I had an ultrasound to get a better look and it was determined that due to the specific location of the clot, they could no longer use that port for chemo for fear of the chemo dislodging the clot. I had to have a new port installed before my next round of chemo (so chemo was delayed for a week of two). This was my first chemo after colon/liver surgery. Since your doctor hasn't said otherwise, I would assume the specific location of your clot does not interfere with chemo. But I would ask to be double sure.

I was prescribed lovenox injections twice a day. It has been 2 1/2 months and I'm still on them. One onc said I would likely be on them for 6 months. Another onc said I could stop them as soon as I get the port removed (my last chemo is Dec. 17th --- I don't know how soon they remove the port after that). I have a ct scan next week and I'm sure they will be looking at the status of the clots.

Right after they found they clots, they told me they was a small risk of the clots traveling to my heart or lungs and told be to be on the look out for more serious complications (and go ER immediately if I had any symptoms). I was worried for a few days, but I'm over that now. The shots are no fun, though. My husband does them. I look the other way. I do have bruises and little bumps all over my tummy at the injection sites.

I know it is not fun to get the shots, but try not to worry.

[testing765]

Hi Allen and ArizonaMom:

Thank you for sharing your experience with me. I did finally get a call back from the oncologist and he answered my questions, so I feel a little better now.

[janderson]

Find another oncologist. That is what I did twice and I have no regrets.

[Voxx66]

Where exactly was the clot? Honestly - depending on the severity of the situation - your oncologist probably isn't the best person to handle serious clots. You may want to find a hematologist if you are very concerned.

[testing765]

Hi. The clot was in a vein between my neck and shoulder. I asked the ER doctor if this could cause a stroke, and she said no, if anything it could cause a pulmonary embolism. The cancer center I go to has both oncologists and hematologists. When I asked the oncologist when I could switch to coumadin or warfarin he said I may need to stay on the enoxaparin injections until the port is removed. The enoxaparin injections are expensive though.