Olymphians - I hate these nodes!

[Ashlee H.]

Since making the decision to stop treatment and re-evaluate in January - I had somehow hoped my cancer markers would be kind and just remain stable for a few tests. I've only missed one treatment, and already my numbers are on an upward tread.
My CEA is a tiny increase 3.7 to 3.9, which I know is nothing, but for me my lowest was 1.9, so I'm not happy about this.
But my CA 19-9 always is the first to start going up. Lowest I've ever had was 19.9....I got it down to 22, it went to 24, and this week 28. Still in the "normal range", but once it reaches the 30's, it tends to double every 2-3 weeks.
So, for sure a scan in January. I'll see my ONC next week, and I know he'll want me back on chemo. My head is still saying "NO", but who knows how I'll feel in January.
I'm just amazed how these cancer cells can just take off when you stop chemo for such a short time.
To be killed by chemo or the cancer? I hate that some of us have to make that decision.
Anyone having success with killing the inoperable lymph nodes? Kathryn - once you feel better - let me know if you'd do Zaltrap again.
-Ashlee

[scattered edge]

I'm watching nodes too. My cancer came back in July... to distant lymph nodes. Clavical nodes were removed with a surgical biopsy - 14 of the darn buggers. The others are inmy abdomen too close to that darn aorta. I was on iroditican and got very very ill. My onc ordered a CT scan to see if there was some kind of blockage, they discovered the nodes had shrunk. He took me off the iroditican. I am now on 5-FU and avastin. Yesterday morning I began to get some bloody nose issues ... crap... it's never ending. My next chemo is December 13, and I get another CT scan. I'm hoping, of course , for good news.. but I just have a nagging feeling that something isn't right

Today I worked a 12 hour tour. I use to breeze through those long days... now I'm draggin my butt. I came home and crashed on my bed for about 1/2 an hour before I could drag myself to the kitchen to eat some supper.

Rosie

[Phuong]

These incremental increases really suck, especially when you have a feeling you know where it's going. I hope that things stay stable for you over the holidays and that you are feeling better by January.

[Lisahopes]

Ashlee thanks for letting us know how you are doing. After your angry Giraffe post, I have been thinking of you.

I am still happy for you that your CEA levelas are in that range. My mom's CEA is over 800 - and that is despite Irinotecan and Avastin.

I wish you a wonderful chemo-free Christmas and strength to make the right decisions for yourself in January.

[lepperl]

I hate these darn nodes too. I am praying regorafenib will do the trick. I have nodes all over my abdomin but they can actually be palpated and are vey large in the groin. They have obviously gotten smaller over the past three weeks on regor. I will have Ct next week to confirm and I will let you know. I was going to try and radiate them but that is being put on the back burner until I find out if this regor is working or not. I am trying to get a hold of someone at CTCA to see if I can combine the deep tissue hyperthermia with the regor and maybe that will really do the trick. They were going to combine heat and radiation but then I would have to drop the regor. If I drop the radiation in stead of regor then maybe I can keep the heat. I'll let you know what they say about this too. Deep tisssue hyperthermia is soposed to potentiate both radiationan and chemotherapy. I have so much faith in the heat. These nodes seem to be impossible to penetrate. Heat should do many things to help this. 1.--extreem temperatures alone may kill cancer. 2-- just like with a fever, heat stimulates your own bodies immune sytem to work better. 3....Heat improves circulation which will cary oxygen rich blood to the tumor site. If you google Cancer treatment centers of America. Click on treatments and then go to deep tissue hyperthermia. There is a video explaining it. You do not have to give them any information or sign in or anything to do this. Heat is considered new treatment per ctca and not experimental so they tell me many insurance companies are covering it. They are still looking into mine and will let me know. I tried to ask what it would cost if they did not but I can't seem to get a straight answer. Belive me I will before I travel back there.
Lori

[lepperl]

I found the description but I can't seem to download the video to here

Home / Cancer Treatments / How We Treat You / Radiation Therapy / Deep Tissue Hyperthermia 32More Sharing ServicesShare on printShare on emailShare on twitterShare on facebookDeep Tissue HyperthermiaLearn More About Deep Tissue Hyperthermia: Chat with Us | Email Us
Cancer Treatment Centers of America (CTCA) offers deep tissue hyperthermia, an innovative technology used in conjunction with radiation therapy or chemotherapy, to treat certain cancerous tumors deep in the pelvic or abdominal regions of the body.

Where Is it Being Offered?
In January 2011, CTCA at Southwestern Regional Medical Center in Tulsa, Oklahoma became the third hospital in the country to offer the BSD-2000 Hyperthermia System.*

In June 2011, CTCA at Eastern Regional Medical Center in Philadelphia, Pennsylvania acquired this technology.

Although centers throughout Europe have been using hyperthermia for years, the machine is not widely available in the United States.

What Cancer Types Does it Treat?
Formerly a national investigational research study, deep tissue hyperthermia is now FDA-approved to treat cervical cancer in conjunction with radiation therapy. This may be a promising option for cervical cancer patients who can no longer receive chemotherapy.

Deep tissue hyperthermia is also being investigated in conjunction with radiation therapy or chemotherapy for the treatment of other abdominal and pelvic-area tumors (e.g., prostate, soft tissue sarcoma, endometrial, ovarian, uterine, rectal, bladder, colon, pancreatic and gastric). This may be promising for patients with locally advanced, persistent or recurrent deep tumors of the pelvis.

Another treatment option for patients who may not qualify for deep tissue hyperthermia may be local hyperthermia, which treats tumors closer to the skin surface.

How Does it Work?
Prior to this procedure, a CT scan is performed to precisely locate the tumor area. During the deep tissue hyperthermia treatment, one temperature probe is placed along the gluteal fold and two to three more are inserted into naturally occurring orifices, to accurately monitor external and internal temperatures during the treatment.

A water-filled applicator is then placed over the patient’s abdomen and focused electromagnetic energy (radio frequency energy) is directed at the tumor, heating the tumor to a temperature between 104oF to 107oF, which is about the temperature of a standard hot tub.

Deep tissue hyperthermia dilates blood vessels around the tumor, causing oxygen-carrying red blood cells to spread into the tumor.

•When the patient is later exposed to radiation treatment, the radiation reacts with the high levels of oxygen in the tumor, potentially destroying the cancer cells.
•When the patient receives chemotherapy after deep tissue hyperthermia, the increased blood flow to the tumor area potentially brings more chemotherapy to the tumor.
The heating effect is monitored and can be turned down if it becomes too hot. It immediately stops when the equipment is turned off.

The deep tissue hyperthermia treatment can take up to two hours and is typically performed twice a week for the duration of the radiation or chemotherapy treatment.

What Are the Potential Advantages?
•The machine is designed to reach tumors that are located more than 3 cm under the skin surface.
•Cancer cells may be weakened or destroyed, while healthy tissue is usually not damaged.
•Side effects are generally minimal.
*Please note: At that time, the BSD-2000 Hyperthermia System was being offered to a limited number of qualified clinical study participants under an FDA-approved protocol.

Note this last line was from june 2011 I was just told yesterday it is condidered new not experimental treatment

[Maia]

I found the description but I can't seem to download the video to here

You can see the video at this page: http://tinyurl.com/b7d6tm5
Way to go, Lori! I'm positive they will be OK about doing regorafenib + hyperthermia!

[pollo65]

Nodes, to me are the real "whack a mole" game, you get one, it goes away with chemo but it is usually replaced by two or a cluster. If you try to take a break from chemo it starts all over again. I am hoping for something new (really new) and exciting to get the damn nodes.
pollo 65

[Mona]

Ashley,
I hate your nodes as well.You cannot have surgery to remove the nodes? The location is too bad? You do not have cancer in the other place right? How about getting another opinion.
I just wish you well. Prayers.
Maria

[Ladybug]

I hope that you get some good news soon Ashlee.

My Mom was on Zaltrap (she thought it was Regorafenib but i found out later that it wasnt) and it was harder on her than FOLFOX, but she had much much more extensive disease than you have right now. All I know is that it was far more harsh on her than anything else we had tried before. The good news is that her CEA levels were dropping and the oncologist thought it was working (she didn't die from her cancer, but from sepsis).

I hope you find a solution that brings you lots of good quality time.

[some]

Ashlee,

I hope you can find the right balance of solution and good life quality. I am sorry these nodes are so evasive. I thought Zaltrap was supposed to be like Avastin so I am surprised to hear that there are these harsh side effects.

Thinking of you and hoping you feel well enough in January to try to get these bad guys. Not operable because of location, right?

Serena

[Kathryn in MN]

Just me personally, but I would continue your chemo break. I wouldn't even have my labs checked again until I felt well enough to consider possibly having chemo again if needed. It just causes worry and stress for no good reason. I'm not having labs again until later in January. I know there is no way I will consider any chemo before that. And even if my CEA starts to rise, if I don't have pain from any bone mets, and don't have node mets large enough to see on scans yet, I won't do chemo. I will only consider it if I have multiple mets again without other options.

I've kept in touch with two women in my state in a similar situation to mine that stay on maintenance chemo always. Two of them keep having nodes or lung nodules pop up here and there even on maintenance. They have SBRT or cryoablation done, and continue maintenance chemo. I've done just as well as they have - but with no maintenance. I do chemo to beat it back down, and then take a break again.

There are two camps of thought - one is that it is easier for the cancer to get out of control and/or become resistant to the chemo if we go off it. The other is that the cancer is more likely to become resistant based on the amount of time we are on the chemo, which would lend preference to taking breaks. I'm in the latter camp. I've seen what overuse of antibiotics does. I feel cancer is the same. It becomes "smart" and finds work-arounds to the chemo after a while. I'd rather beat it down, take a break, and then form a new plan each time it comes back.

If I'm strong enough again when the cancer spreads again, I'll see what options I have. Chemo is always last choice for me, but sometimes it is the only choice, and so far has served me well. I might even do Zaltrap again, but I'd ask to reduce the dose again, and would probably only do a few doses.

For those that haven't dealt with multiple distant lymph node involvement - this is a unique situation. Surgery usually isn't an option for multiple reasons. Often they are scattered around to too many spots. Often they are positioned where it would be very difficult if not impossible to remove them. And it is hard to get anyone to do surgery which is only considered palliative and not curative. Having liver or lung resections is considered curative. Someone that has only had a recurrence in one or two nodes that are resectable is considered curative (I have a friend that had a recurrence in just one node that was resected and followed up with adjuvent chemo and has been NED for over 3 years now). For some reason doctors seem quite happy with giving us palliative chemo or palliative radiation, but not palliative surgery...

For those of us that have been playing "whack-a-mole" for years, with current options, we can't be cured. We beat it down, and it comes back again. We hang in there playing the game. But we also have to make tough decisions about quality of life vs quantity of life. No one was meant to be on chemo for years and years. Chemo was intended to take care of small cells that might be left behind after surgery, or to shrink tumors to the point that surgery can be done. Or for some types of cancer, chemo it is expected to wipe it out. For those of us with mCRC where the metastasis is to multiple distant lymph nodes, chemo is only expected to help keep us stable and increase or quantity of life - not to cure us. We aren't expected to get to a point where we can have surgery that will cure us. (Or any other procedure that could cure us.) But how much can we take? Chemo is not without its side effects during treatment, and others that are permanent that we live with even when we stop. The longer we are on chemo the worse it seems to get. It truly is a balancing game.