do any other people have a secondary cancer and how has it affected the treament of their cll

[Agiwood]

a few years after diagnosis I discovered I has osophageal cancer, I had chemo and surgery but 3 years later I now need treatment for the cll, Dr's are reluctant to start it as the cancer causes complications, they say there is a high probability that the osophageal cancer would come back, I now have to weigh up the risks, but I'm finding it hard getting information

[MsLockYourPosts Passed Volunteer]

Which cancer are the doctors telling you would cause complications? Is your doctor a CLL specialist? Many of us with CLL deal with secondary cancers. In my case it is breast cancer, for which I had two lumpectomies and then radiation. My treatment for CLL came first - rituxan three times and cytoxan once, in all cases for my kidney involvement. I have read about people being treated for other cancers and that that treatment had a positive effect on their CLL, but I have not seen this warning before. I would ask a lot of questions about which treatment the doctors would recommend for the CLL, what other options, treatment wise, are available, why they think treatment would reactivate your other cancer, whether that is true of all the treatment options, and whether you would be eligible for one of the non chemo trials. I hope someone in a position more similar to yours will chime in, or maybe someone with ideas about other questions.

I have to say that I am skeptical about advice like what you have been given, if the doctors can't explain their reasoning. My initial experience with treatment was with the local oncologist which my HMO assigned me to. I was very ill at the time, and didn't question things. i should have. The treatment was absolutely the wrong thing for my particular case and I ended up in the hospital septic in a week. Fortunately, I was sent out of network to UCLA, where I ended up with a doctor who was a CLL specialist, understood my particular issues, and treated me accordingly. You have every right to ask a lot of questions and to get answers. You also have the right to a second opinion before committing to treatment.

Pat

[Cllcanada Top Poster CURE Hero]

I would certainly get a second opinion from a doctor who treats agreat many CLL patients. Here is a link to a list of CLL specialists

cllsupport.org.uk/experts.htm

[Agiwood]

they say there is a high probability of the Eosophagus cancer returning, this has never been mentioned before and certainly I wasnt told before I signed consent forms for chemo, (FCR), if I had known it would have made me think twice before signing, the Dr's now feel that they want to delay as long as possible any treatment, and while I understand and agree with this it feels like I am facing the dilema again at the end of the month, they have told me that in anyone else given my symptoms they would absolutely start chemo, but I am complicated, if the cancer returned further surgery is not an option, so it changes everything and I now feel I am deciding which carries the greater risk, between the devil and the deep blue see sort of thing. I have an appointment for the 30th of this month so I will be asking for facts figures and percentages then, I need to know what they base this theory on and how great a risk it actually is.

[Tanagergreen]

I had treatment for CLL in 2004 and in 2008 was diagnosed with lung cancer. After a further 6 months of chemo for the CLL, I had a right pneumonectomy. Now they think there is something in the left lung which is being investigated. The CLL is now way out of control with a very low platelet countas well, but while the haematologist is reluctant to start more treatment, the chest physician thinks the CLL treatment should go ahead. I have another CAT scan coming up this week to see if there is any change in the lung situation, followed by appointments with first the chest physician and then the haematologist, I wish these people would get together. This is my future we are talking about! So I have a certain sympathy with Agiwood's situation.

[MsLockYourPosts Passed Volunteer]

It sounds like both of you need to be seen at someplace like a teaching hospital where the doctors do talk to one another. I was fortunate, when I added breast cancer to my collection of medical issues, that all of my doctors were at UCLA, knew each other well, and communicated. I don't know how much you can push, but I would certainly do whatever is possible to get your doctors to connect with each other.

Pat

[Tanagergreen in reply to MsLockYourPosts]

I am happy to say that finally all the specialists involved had a multi disciplinary meeting, and I shall be starting stereotactic radiotherapy for the lung cancer, which is still very small, at the end of this month. Then they will have to decide if BTK inhibitors are appropriate, and available for the CLL.

[Lapo]

Hi.I know I am responding to a 9 months old post but it has relevance to me now.

I have CLL and have been diagnosed with kidney cancer which will be surgically removed in January.

It's not so much that the kidney cancer treatment interferes with the CLL treatment but what I am aware of is that the specialists remain within their respective disciplines and do not consult with each other as much or as 'creatively' as they could, hence leading sometimes to contradictory or incompatible therapies. Does this resonate with anyone?

[MsLockYourPosts Passed Volunteer in reply to Lapo]

Lapo - Is the plan just for surgery for the kidney cancer, or are your doctors talking about radiation or chemo also? I found that before getting to UCLA, which is a teaching hospital, and having a hematologist who looked at my breast cancer as well as my CLL, in addition to knowing my breast specialist, my doctors weren't communicating, and I was doing all of the work to hold the pieces together. The fact that my CLL is atypical and presents in the kidneys in a way similar to AIHA or ITP, in that it involves the body essentially attacking itself, and that I was severely immune compromised, just confused things even further. I hope you can find a way to get your doctors to talk to one another!

[Lapo in reply to MsLockYourPosts]

Hi. This is 'just' cancer surgery for kidney; no chemo or radiotherapy planned.

My haematologist has not been consulted as far as I know. She assumed a year ago when this first spotted on the CT scan that this was a cyst. Similarly the urologist does not see any links to CLL or register the cancer as a possible leukaemic infiltration. Both of them are reluctant to step out of their area of expertise yet each is a top expert in their respective field.

Chest infection is apparently one of the complications of kidney surgery and as a CLL patient I do not want to catch that.

I shall make sure that everybody knows but in my experience so far once you are part of a 'procedure' it seems that medical staff are only interested in directly relevant facts.

[MsLockYourPosts Passed Volunteer in reply to Lapo]

Dealing with specialists brings it's own set of frustrations sometimes. I would be sure that the tissue from the tumor is looked at for CLL infiltration In addition to anything else the nephrologist is checking for.

[Lapo in reply to MsLockYourPosts]

I will. Good point. Thank you.

[Myrddin in reply to Lapo]

I had minor surgery and was given an intraveneous anti biotic just in case

[Lapo in reply to Myrddin]

I have since had my pre-op assessment and this is exactly what is being recommended. Thank you.

[Agiwood in reply to Lapo]

Lapo, first please let me wish you all the luck in the world for your surgery next month, I was faced again last week with the same situation, one hospital telling me it is now way past time for treatment for the CLL using chemo, they were writing to the Heamatologist suggesting this, but when I see him he disagreed, his story was that the Oncologist treat only the Cancer while he treats the whole person, this is an attitude I do agree with but dont these people know what they are doing mentally to the patient, its an emotional roller coaster, having had chemo beofre I was in no hurry to repeat the proccess, this time the plan was for a 6 month course via a pic line and overnights in hospital to deliver another two types of chemo, the Heamatologist says he is in charge of the CLL and the Oncologists are in charge of all things CLL related, both however are wrong, I am in total charge, I am taking back control and as they cant seem to sing from the same hymn sheet I'll decide what happens and when from now on.

My advice is take control, ask questions, and dont be fobbed off, make sure you get answers that you not only understand but can see the sense in, I think sometimes these Dr's are so clever that they forget it is peoples lives they are dealing with, good luck and let us know how things go for you.

[AussieNeil Partner Administrator in reply to Agiwood]

Well said - thanks for the encouragement for us to remain in control of OUR lives.

Neil

[Lapo in reply to Agiwood]

My feelings entirely.

Interestingly, my situation is made 'more interesting' by the fact my younger brother is a neurosurgeon, a demigod amongst medical staff, and he too thinks he knows best.

On the other hand, we do rely on the professionals to make us better and have no choice but to trust them. All I am asking is that they spend more time exchanging clinical views. They are very bright people after all; something would come out of it for certain.

[MsLockYourPosts Passed Volunteer in reply to Lapo]

The hematologist is in charge of the CLL and the oncologists are in charge of all things CLL related makes no sense! A hematologist is an oncologist first and should be overlooking the whole CLL picture. I have to agree that there are times when we have to assert that they are talking about OUR lives.

Lapo I understand about your brother. My closest friend is a psychiatrist at UCLA - known internationally for his work. He insisted on going to some of my appointments. He did the same with another very close friend who had colon cancer. We both ended up having to tell him that we appreciated the connections he provided for us, and he did get us both into the top people in their fields, but that he needed to back off essentially. He was pushing our doctors in a way that was not helping our causes.

Ain't life fun sometimes!

[kreale]

I just saw this post and wanted to see if anyone else is in the same situation my husband: He was diagnosed in Feb. of 2013 with CLL and put in W&W status from his doc at MD Anderson. Two weeks ago, a biopsy revealed oropharangeal cancer and has a consultation this week with a head/neck onc. team back at MD Anderson and a second opinion at Dana Farber scheduled for the next day. Has anyone else experienced this? If so, please describe your treatment and how it effected your CLL.

Thanks in advance for sharing.

[Cllcanada Top Poster CURE Hero]

Sorry this website is broken.. you are doing the right thing... I suggest you post a new thread.

~chris