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Need treatment options advice recurrence lymph nodes

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

Hi everyone,

Pet/CT scan came back as an enlarged node at the bottom of the neck, as well as a cluster of enlarged nodes in the para aortic section, the biggest of which is 3cm x 2cm, ranging in span about 3 vertebrae. At least this is what I got from the medical notes after doing some research.

Is it common to have surgery and/or radiation in these areas? Also any suggestions of how to tackle this with the chemotherapy doctor and surgeon i.e. tissue assays, types of treatment or chemo etc, whether PR+ or - etc?

Thank you

Tali

JoAnnDK
Posts: 276
Joined: Jun 2011

Tali, sorry to hear that your mom's PET scan showed up more problems. I am sure you are beside yourself. Have you talked to any doctors yet? I think that needs to be your first step, then you can come back and educate us!

Best wishes.

JoAnn

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

with recurrence in supraclavicular lymph nodes. I found lump which was removed and biopsied - confirmed recurrence of UPSC. I decided to watch and follow strict anti-cancer diet. Ca125 continued rising for next 4+ months, then doc suggested treatment regime of weekly low dose carboplatin (I already had assay a year earlier and doc thought carboplatin) in conjunction with radiation (for synergistic effect). I had low dose tomo radiation daily - all for 7 weeks.

Treatment was difficult toward end and immediately after. I took medical leave about halfway through and decided to retire from FT work (a very good decision for me to lower stress and focus on wellness). It is important to stay positive and not get anxious. At one point early on, my anxiety caused exacerbation of symptoms which I was able to get a handle on with meditation and medication (hmmm....M & M therapy!!).

It has been almost a year since completion and I've had good test results since. Have my fingers crossed.

Good luck with everything. If you want my detailed info on procedure, let me know.
Mary Ann

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

Thank you Mary Ann. Did you have a PET/CT Scan to see if it had spread anywhere else?

Mum is particularly scared of having more chemo as the last lot clearly didn't work and appeared to accelerate the rate at which it is growing and spreading. It is hard to understand how your body can fight off cancer when they almost kill you!

How long was it between when you finished treatment and your recurrence?

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

It was over a year between completion of treatment and when I found lump in lymph node. However on each scan there was always discussion of that area - something questionable - they even referred to possible "brown fat". My guess is that the chemo did not rid me of the "resistant" cancer here.

I did have PET/CT to check before and after. After it was clean.

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Your mother's recurrences are quite similar to mine, which were first noted and biopsied just over 2 years ago, which was over a year after completing first line chemo following debulking surgery. The cluster at the base of my neck appeared about six months ago which was treated with local radiation as the swelling was somewhat uncomfortable. Surgery is not routinely done if there are multiple locations (i.e. para aortic and supraclavicular). Are the neck nodes on the left side? That is the most common area of lymph node recurrence according to my gyn onc. I had posted a month or so ago a site which provided a good overview of the lymph system and its drainage pathways. The left neck area is the end of the drainage path from about 2/3 - 3/4 of the body. That is the point where the lymph fluid drains into the circulatory system. Here is the link if you are interested:

http://www.lymphnotes.com/article.php/id/151/

It is possible that other chemo agents may be able to treat even this even though her first round chemo apparently did not. I was treated with single agent Gemzar for most of 2010 which did resolve nodes to a clean PET/CT scan and normal CA 125. I am currently experiencing recurrences in all these areas and will be considering chemo as well. I will be interested to hear what the doctor recommends.
Annie

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

The lymph node is actually on the right side. It's not a cluster there but there is a cluster in the para-aortic lymph nodes.

The oncologist basically said that chemo might work, but it will only work for a while and will inevitably come back with any chemo they can offer. Hard news to hear even though you think that's what they are going to say anyway. He also said surgery and radiation would be pointless because if it spread to the neck then it is likely to be everywhere in between.

We are thinking about doing a very radical diet called gerson therapy. Because there is a small amount there we are thinking that this radical alternative therapy might kill it. It's a gamble, but then so is the chemo. We have read many wonderful survival stories following the use of gerson where normal medicine just didn't work.

Annie I will let you know what the oncologist recommends as a chemo option so that you have more info for you recurrence.

Tali

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

Sorry to hear of this recurrence. I am currently undergoing a second series of carb/taxol chemo for a very similar recurrence - small para-aortic nodes (under 2 cm) and an even smaller supra-clavicular one. CT scan showed one para-aortic node right after chem but that had disappeared by 3 months after radiation. However another had appeared that we 'watched' for 6 months before it grew at all and was joined by another. Ca 125 is not a marker for me at all. Then another CT scan found an enlarged node on the left side of the base of the neck. That brought very somber-faced doctors into the room. At that point radiation was ruled out for the very reason you mention and a second round of carbo/taxol was recommended. The doctors said that was the way to go because it had been almost 18 months since the first round of chemo and having the same 'cocktail' would keep me eligible for clinical trials. My first infusion was October 7. My reactions were slightly different than the first time - more chemical taste in mouth, more nausea - but once again it was quite manageable. I go again this Friday and expect they will change my meds somewhat.
Sending you my wishes for the very best outcome.
Suze

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

Hi Suze,

Carb/taxol is what has been recommended to mum, even though she recurred only 4 months after finishing treatment.

She has refused this treatment for now and is going to a clinic overseas to start an alternative therapy, I will let you know how it goes. Will be nice to have a break from chemo regardless.

Wishing you a long remission.

Tali

SuziDezi's picture
SuziDezi
Posts: 25
Joined: Dec 2009

Hi Tali

Where in Europe is your mom going for treatment? Please keep us posted - we are all hoping for a very successful experience for her. Give her a big hug from me.

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

Thank you, she is actually off to mexico today!

HellieC
Posts: 425
Joined: Nov 2010

What sort of alternative treatment is your Mum going to have? Does it include vitamin B17? I am interested because I have been taking B17 tablets, together with zinc and other supplements since my chemo stopped in January, so it would be very interesting to find out about how these sorts of treatments are applied in a clinic setting.
hope you don't mind me asking!
Kindest wishes to you and your Mum
Helen

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

Hi Helen, it is Gerson Therapy. It involves juices, enemas and supplements (plus regular food off an approved list).

There are a number of supplements and B12 (not B17, I'm not sure what the difference is) is included:

Supplements: All medications used in connection with the Gerson Therapy are classed as biologicals, materials of organic origin that are supplied in therapeutic amounts.

Potassium compound
Lugol's solution
Vitamin B-12
Thyroid hormone
Pancreatic Enzymes
Enemas of coffee and/or chamomile

Hope this helps.

Tali

HellieC
Posts: 425
Joined: Nov 2010

Thanks, Tali - I've heard of the Gerson Therapy but don't know anyone who's followed it. I do hope your Mum benefits from it.
B17 is quite different from B12. B17 is extracted from apricot kernels (if you google "vitamin B17" there are lots of sites with information about it).
Hope you can keep us in the picture about how your Mum is doing.
Kindest wishes
Helen

willbesurvivor's picture
willbesurvivor
Posts: 50
Joined: Jan 2011

I will keep you posted. The therapy is harder when you have had chemo but not impossible. She is strong enough to do it so we are very positive.

In any event it is much better than chemo!

Tali

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