Lymph nodes

[ronnie1943]

Hi, ....husband had a 3cm cancerous lymph node removed to get a biopsy. My husbands mutations qualified him for a targated therapy drug called Cometriq. Before surgery oncologist was going to have him go for targated radiation, changed her mind said there were to many lymph in the pelvic area, but the three lymph node that were cancerous were near the aorta???? Does anyone here have had targated radiation on lymph nodes????

[GAdrummer]

The doctors that my husband has seen have refused to irradiate, remove or biopsy his node only disease because the nodes were tucked between the aorta and the spine. They maintain that it is too dangerous. Either they are afraid to try or the insurance companies won't let them.

[ronnie1943 in reply to GAdrummer]

Oh boy,....we are at there mercy!!! Sam's lymph node that was removed was near the aorta, it was 1.3cm ..the surgeon said it was very deep, he went in from the side to get it out.Had a biopsy and the biopsy showed Sam was a canadate for this targated therapy drug Cometriq, the side effects have been brutal, but it will be all good if this drug is working. We are going for a cat scan next week. What treatment is your husband on now?? and are they going to do radiation on the LNs

Thank you for responding to my post and best wishes

To you and your husband, keep us posted.

Sincerely, Lynn

[GAdrummer in reply to ronnie1943]

Radiation is about the only thing he hasn't had of the standard treatments for node only mPCa. Aberaterone and Docetaxel have been the latest failures. A PET scan is scheduled next week to see if they can find the new growth in a biopsy-able area. The new growth has been slowly migrating up into his chest. He is still recovering from his last infusion and should have had the next this coming Monday, but all is postponed pending the results the following Monday. His PSA is higher now than when he started the chemo.

What kind of side effects did Sam have?

[ronnie1943 in reply to GAdrummer]

Hi, thanks for your response... Yes, Docetaxel, Zytiga, Xtandi failed Sam too. Sam went almost ten years just being on a pill called casodex and the hormone shot. Last summer cancer came back with a vengeance... Sam had, fatigue, mouth sores, nausea was terrible.when he was on the chemo, it took almost a year for him to feel better after his last chemo. Now he is on that targated thearpy drug and the side affects are really brutal. Please keep me as to how you make out after scan, Sam is also going for a cat scan next week.

Take care, best wishes!!! Lynn....

[dress2544]

Hi

When my disease turned to Castration resistant after about 20 months of lupron and an initial salvage radiation, I had recurrence in paraaortic lymph nodes. The size was 1.7cm x 1.5cm. My Radiation oncologist first suggested targeted radiation (stereotactic radiation). But later he changed to normal IGRT radiation (28 fractions). The reason he told was there may be many microscopic spreads in the nearbyby area also which cannot be detected by any modern scans. So he did IGRT radiation to a long strip as a precautionery measure. I don't know how far his decision is correct. Now it almost ten months passed. I am on Aberaterone and Prednisone and my present psa is 0.83. Discuss with your RO and take decision as per his advice. Thank you and best regards.

[Hidden]

Hi Ronnie1943-

My dad is just beginning his journey with advanced PCa . His affected lymph nodes are all around the aorta. The treatment recommended for him is ADT and Docetaxel. He has been experiencing stomach pain after first round of chemo. The doctor believes it's the lymph nodes reacting to the Docetaxel. Which mutations did your husbands test reveal? My dad did genetic blood test which came back negative but haven't yet gotten the FOUNDATION ONE results back on his tissue sample.Hope your husband's doing well.

[ronnie1943 in reply to Hidden]

Hi, first I want to thank you for your response. Sam. my husband also had pain in his stomach, he had lymph nodes involved....all these drugs each have a whole host of Dodd effects. .I'm sorry, I don't know the exact mutations that Sam had, I'm sure I can find out and get back to you with that. I can tell you that Sam's oncologist was disappointed that when Sam's lymph node biopsy came back his mutations did not qulify him for Keytruda. We're were told Keytruda is for lung cancer but now they found that it does great for PC cancer.

I think I mentioned to you that Sam is on this drug right now called cometriq. It's a targated ttherapy drug. The side effects have been hard. We go in a couple weeks for a cat scan to see if it is working for him.

I'll be a wreck. When you say your Dads genetic blood

Test came back negative, does that mean he had no mutations or will mutations only be found in a tissue sample, Sam's mutation was found in a cancerous LN he had removed. Sam was Dx ten years ago sge 65. He is now 75 young!! He did so well all those years on just a hormone needle and a pill called casodex. You would think I'd be more educated on this cancer thing,, I'm just learning now that Sam's cancer has now come back so aggressive, I guess I thought being that Sam felt so good for so long that it would always be like that.. there are so many on this site that are so educated on all of this, not me, most goes right over my head... I even say at times when we are at the oncologist talk to me like I'm five years old!!! I myself just appreciates and love all the support and that people on the site really care and know what we are all going through..

Take care, please keep me posted and I know your Dad will do just fine, Docetaxel chemo, has some not so easy side effects but has really good out comes. Hang in there,

Sorry for the long post, I ramble when I'm nervous.... Lol!!!

Best wishes and good health!! Take care and don't forget to keep me and everyone posted as to how your Dad is doing.

Sincerely, Lynn

[Hidden in reply to ronnie1943]

Lynn,

My dads sister, brother, nieces, nephews, cousins carry the BRCA2 mutation. My aunt and cousin recently had breast cancer. My dad's father died of prostate cancer. So, we naturally assumed that he would also carry the BRCA2 mutation with his diagnosis. Weren't we surprised when it came back negative! He just started treatment and is responding well so far with some side effects. Like your husband, he is having the cancerous lymph node sample biopsied to hopefully see what mutations, if any are there so as to have targeted therapy. Boy, your husband got a long run with his ADT! That's fantastic! When my grandfather died of prostate cancer 25 years ago, treatments were primitive. But we are living in exciting times medically speaking. New treatments and medicines are always on the horizon. Cometriq is new to me. I'm going to look it up. I sure do hope your husbands finds success while on it. I'm so grateful to learn more about how others like yourself are managing. Take care of YOU AND HIM!

[ronnie1943 in reply to Hidden]

Hi .. So happy to hear from you again!! You are so more informed than I am....I would love it if and when you get the chance if you could look up cometriq and let me know what you think?? and what your findings are. They say it's still in clincial trial for prostrate I've read so many articles on the drug and most goes right over my head.! ...Like your dads family, there is also a history of cancer in Sam's family. We are going for a cat scan in a week or so to see if the drug is working?? Fingers crossed!!! Sam takes three pills a day and had to go to two.the two pills did nothing so he's back to the prescribed amt. the three. For Sam the drug is hard to tolerate. Also we live in the suburbs of phila. We are five minutes from Lankensu hospital to see Sam's oncologist. We are thinking of getting a second opinion at the University of Penn in Philadelphia with an oncologist prostrate specialist.Sam's original oncologist from the start retired, he's been with this new one for about five years now and I'm not that happy lately with her, I feel she rushes us and I leave there upset lately.

Keep in touch and let me know of your Dads biopsy on his lymph node.

Thank you for your kind words, and you take care of YOU and YOUR DAD too!!

[Grumpyswife]

Hi Lynn, My husband is 75 yo as well. Dealing with this for 18 years now.

In January my husband had an Axumin scan that showed some previous lung lesions and some new lesions near his esophagus. We were hoping for stereotactic targeted treatment but the radiation oncologist said it was too risky. He felt systemic treatment best. Husband started Xtandi.

We have been unable to find anyone willing to do targeted radiation which some on here think is useless but I don’t. At least he is responding to Xtandi so far but I like to look ahead. Very interested in your situation.

Mary

[ronnie1943 in reply to Grumpyswife]

Hi Mary, I'm not to good with all this tech. I'm 74 and was given an iPad two years ago for a Xmas gift. Im trying to teach myself, that said, thank you for getting back to me. My husband Sam has been ten years, long story..He had a tumor removed from his arm, he was always so strong and he felt it was just arthritis, after a month he couldn't stand the pain.sure enough it was a huge Tumor that was eating away at the bone thank god they were able to save his arm. Radiation and Went ten years on casodex, hormone shot..from casodex to Zytaga, & Xtsndi . His cancer came back last summer with a vengeance. Tumor blocked kidney tubes, went into kidney failure operated on and had . Kidney bags which were removed after six months Went through 12 months of chemo, 8 weeks radiation, then finished PSA doubling fast. and found LNs near the aorta, surgeon remove the largest LN and first they

Had said Sam would get targated radiation therapy, then oncologist said that was not an option. Sam is taking this drug now, it's a targated thearpy drug,

Cometriq, he takes three pills a day, they had to reduce the dosage to two pills a day and that was not working, so back up yo the prescribed dosage of three pills we are going for a cat scan in a couple weeks to see if this is working, Mary, the side effects are brutal. His oncologist is hoping Sam can with stand these, but I don't know what would be next. ???. going back Sam did have targated radiation and it did get rid of the tumor blocking his kidney tubes. Plus other tumors.

Please keep me posted on your husband and his

Treatment.

Best wishes... Lynn