Anyone with cancer on their retroperitoneal lining?

• By kla
• Posted February 8, 2009 at 2:13 pm
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I am going to tell you what I'm sure others are saying. There is nothing you can do by worrying yourself sick. Take a deep breath and leave tomorrows troubles there and enjoy today. Do I know what your feeling? yes there are days when my aches drive me bats and I spend all day worrying. I suggest a funny movie, something that will lift your spirits and take your mind off of it while you are waiting.
I wish I had better answers for you but wanted you to know you will be in my prayers.

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• By Debofil
• Posted February 8, 2009 at 7:14 pm
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Hi:

Some if my cancer is on my peritoneal cavity (stomach lining).

I was just on Doxil but it didn't do me much good.
I start a new one on Wednesday.

Has your doctor suggested interperitoneal chemo?
That is where they put the chemo right into your
stomach and IV too. It's harsh be supposed to be
pretty affective.

The pain you are feeling in your back could be something else completely. The chemo should keep the cancer at bay and not let it grow. What did the doctor say the pain might be? It's very hard when you are in pain NOT to think of the worse case scenario, I think that is natural. I agree with Kla do something to take your mind off of this. If you can.
I've not heard of anyone so far that the OVC went to the spine.

Let us know what your doctor says about the pain.

God Bless.

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• By ReneeK1
• Posted February 8, 2009 at 8:56 pm
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Hi Kla, thanks I am trying.. It's tough but I definitely am.

Deb, the cancer is on my retroperitoneal wall and lymph nodes, which is the back area. The pain in my back IS due to the cancer.

I've had IP chemo, I had 6 rounds of it.... This is a recurrence and the retroperitoneal wall is where it showed up this time.

I'm going to call the Dr. tomorrow.... I was just hoping I could reach someone who's been through this before or is going through it now that can tell me how they are being treated..

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• By roszag
• Posted February 9, 2009 at 4:07 am
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Hi Renne

I'm from Italy and I've been diagnosed with OCA at stage IV in 2006 , my cancer staretd in the retroperit. area and attach the linfnodes , before discovering it I did all the cotrol , eco / pap test everything was perfect ..but the cancer was there hidden and working so far .. i had only a continuos back pain and sometimes also at the estomach ... finally I've been diagnosed in feb 2006 and first operation 20 days later , a total debulking , 18 hours of operation .. surgeons took away 90 linph nodes , the 2 ovarius = debulking ... then I had a few chemio ..and now I'm still here ( when they diagnosed ontly 3 months of life ... ) , I was 43 at that time ... i'm the single mother of a wonderful kid ... an so Hope and FAith in Life are my medicine but above all my son=sun ... hope Hope and be positive .. life NOW don't thing the worst ... I suggest you the operation ... and maybe chemio on the open body while during the surgery ...

be strong believe and you will live as long as you want

lots of love

ros

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• By JC1945
• Posted February 9, 2009 at 6:54 am
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I was dx 6/06 and did the Cisplatin/taxol IV/IP thru 11/06. CA began rising a couple months later .. just 8 to 10 a month until it hit over 100 in July .. but nothing showed on a CT scan. My MD put me on tamoxifen (which works for 10% of OVCA women) and my CA dropped to 20 until Jan of 2007 when it started rising. Did about an 8pt. jump monthly. Still NED on CT scans until the end of May when a 1/2 inch spot showed on or by the liver. The MD and I felt it was too small to go into chemo so we waited and watched. Had total hernia repair in July 07 and the couldn't "see" anything and the fluid from the operation was clear of cancer cells. In Sept 07, multiple areas showed on the PET/CT .. some thought to be the result of the surgery. Well, by the end of Dec., my CA jumped from 77 to 105 and the PET/CT showed spots in the lymph nodes in my back, tiny spots by my spleen, abdominal lining, and the spot by my liver doubled in size to 2.2 cm (still rather small by tumor standards). My MD refers to it as "salt on a pretzel". My CA125 taken 1/8/09 (6 days after the last one) had a jump to 126 .. really fast moving now.

I am today going for my 2nd round of tx (all IV .. Carbo/Taxotere) and will get the CA results from round 1 .. I am praying hard the went down ALOT.

I guess what I am trying to say is that I have "them" scattered throughout the abdomen .. I think that qualifies a retroperitoneal. I have to hope and pray the chemo works .. it doesn't matter where or how much cancer there is ... just that the chemo works. I know there are may therapies to try. The worrying is sometimes overwhelming so I get on here and a couple other sites for support. I try to stay as busy as possible, but have retired and entirely too much time on my hands to feel every (and I do mean every) ache and pain. Considering the two surgeries (debulking and hernia repair), I have to be loaded with adhesions and/or scar tissue which can cause discomfort from time to time.

It's easy to say BREATHE and trust your doctors and for me, I put my life in God's hands that he will see me through this and find a way to a nice, long remission. I NEVER give up the faith I just might get a miracle and have total recovery. Perhaps for me, my faith is my strong medicine and the prayers of so very many, many people.

God Bless you
Judy C

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• By OldieLocks
• Posted February 9, 2009 at 7:25 am
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Hi Renee, I start on Doxil in two weeks for follow up nodules in the stomach lining. The Gemzar did not completely clean up this area during my recurrence. I believe someone here said the Doxil works slowly. I have not had any pain.

Keep us posted on how you are doing. It is hard to not worry when you are in pain. I will ask more questions when I start treatment.

Love and Prayers,
Rachel

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• By Debofil
• Posted February 9, 2009 at 9:16 am
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I'm sorry to hear that, guess I was just hoping for you.

Good luck, Ive read lot of your posts so I know you are strong!

Deb

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• By ReneeK1
• Posted February 9, 2009 at 12:43 pm
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Hi, thanks again for more replies. Rachel, my doctor said the same, the Doxil works slowly. My CA-125 rose from 175 at my first treatment to 318 (just got results from this Friday's treatment).

I've only had 2 treatments so far (latest being just on Friday) and the doc left a message with the nurse that the CA-125 will go up before it goes down.

I told the nurse to let her know about my back pain.

It seems like a very risky balancing act -- which is gonna move faster, the cancer or the Doxil? I'm torn between waiting for the Doxil to take effect, and asking myself, do I really want to CHANCE that the Doxil actually IS going to take effect and what happens if we find out too late that it didn't?

I guess to narrow down the point of my post, HOW do you / your docs handle this balance between these two issues?

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• By Jennali
• Posted February 11, 2009 at 1:17 am
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I wish I had a good answer...or even any kind of answer. As you know, I am in the midst of Doxil treatment for a first recurrence. Thank goodness my doc warned me about my CA 125 rising during the first couple of rounds of Doxil. It was 534 or so when I started treatment. A month after my first Doxil, it had risen to 999. Yea, I'm trying not to freak out. Today, at my third treatment, I had CA 125 testing for the month after my 2nd Doxil. My CA125 is now 1535. I see my doc tomorrow and hope to heck he will tell me that is okay. It is now more than triple what it was when I had a belly full of cancer, pre-surgery.

So I don't know. What if I am not going to respond to Doxil (not every woman does) and meanwhile my cancer is growing merrily in my belly? Will I have wasted all this time, not to mention the effects of the Doxil on my system?

I will try to pin my doc down tomorrow and will report anything useful he has to say.

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• By Shearaw
• Posted February 11, 2009 at 2:14 pm
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Hi Renee, I also have had retroperitoneal (meaning behind the abdominal cavity) disease initially, and as recurrence. Two surgeons gave me the same opinion you got w.r.t. second surgery, especially if lymph nodes are involved. That is because 1) the surgery is complicated to get to the rear of the abdomen, and 2) they assume that there is still microscopic disease in other lymph nodes, meaning you must have chemo as follow-up. Lastly 3) they told me that there has been no statistical improvement to life expectancy with 2nd surgery. That made my decision to not push for 2nd surgery easy.

With my initial retroperitoneal disease, some was inoperable, but they still got me to NED for awhile.

My docs have me on carboplatin alone for now. I am wondering whether your docs have considered that or a carboplatin/gemzar combination, which will be my next step, if needed. I know they like to mix things up when we have recurrences, so that we can still use carbo and taxol later on. I think that all of your fears and questions are entirely reasonable.

Wishing you good responses, Sheara W

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• By ReneeK1
• Posted February 11, 2009 at 6:18 pm
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Jennali, pls let me know what your doctor says. I went to see mine yesterday due to the back pain. She tested my foot & leg reflexes, strength and feeling and we looked at my CT / PET scans from November. Apparently I had an old injury to a vertebrae on my spine (I don't even remember it) but you could see on the scans that there was a little fracture line on one of the "points" that sticks out of the vertebra. It had been healed for a long time based on deposits that showed on the bone. So she thinks the chemo irritated the bone and is causing inflammation. I was allowed in this instance to take 2 Advil twice a day for 3 days. I took 2 last night and today my back is not nearly as bad as it was yesterday so I think she is right. (and Debofil! thanks...) If things are still bad next Monday, she'll have me come back for an early CT / PET.

Jennali, what did your dr. say regarding the Doxil?

Sheara, thank you so much for your response. You made me feel much better with your 2nd to last sentence. My docs think eventually in the course of my disease, I'll go through most if not all of the approved chemos. No platinums as I've proven platinum resistant. We may introduce one down the line if needed but not now. They decided to start me with Doxil.

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• By Jennali
• Posted February 11, 2009 at 9:57 pm
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I saw my gyn/onc today as a follow up to yesterday's chemo, Doxil treatment #3. He is not concerned yet with my CA125. He said that because it is something concrete, we tend to place too much emphasis on it. He stressed that it is only a tool. He places more stock in the scans.

He said because the Doxil works slowly, the cancer cells are continuing to divide. He said my cancer is slow growing ( I didn't ask how he knew that), and therefore it takes time for the Doxil to affect the second generation of cancer cell replication. Hopefully by then the Doxil will have kicked in.

His plan for me is this. I have had 3 Doxil treatments. He wants me to have another CT scan before #4. If my lymph nodes are stable or smaller, he will continue the Doxil. If they have grown or spread, he will d/c the Doxil and start something else. I didn't ask what, but my guess is Gemzar/carbo, because that was almost his choice this time.

He has no problem with this disease being stable or chronic as long as I can maintain a good quality of life.

I just want it to go away...

I hope this helps, Renee. Glad to hear your back feels a little better.

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• By Shearaw
• Posted February 13, 2009 at 12:39 am
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Renee,

Sorry that you are platinum resistent. I believe that "they" are finding that sometimes patients who have resistance to some of the frontline drugs, can tolerate them later on in treatment. Keeping prayers coming for you!

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• By Eileen1941
• Posted February 13, 2009 at 1:11 am
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Hi Renee,

Sorry to hear about all your pain and the difficulty in gaining control of your cancer. Have you been tried on any of the Taxane group of chemo drugs, either Taxol or Taxotere?

I also had cancer on my retroperitenium on diagnosis. The cancer had spread throughout my pelvis, abdomen and into both lungs before I ever knew that something serious was going on. At first I was considered to be inoperable due to the extent of the disease. So I was given 3 rounds of Taxol/Carbo. That shrunk the cancer enough that they did go on with the surgery. This was followed by 3 more rounds of chemo and I did achieve an 11 month remission.

However, I had a recurrence in March of 2008 and have been in treatment since that time. I had a trial of the drug Aflibercept but couldn't tolerate it because it increased my B/P to dangerous levels. I was then placed on Doxil. But I had generalized skin reaction
after 4 infusions and it had to be stopped. I am very light complected and have very sensitive skin, so this may have contributed to my problem with the Doxil. I have now been on Taxotere for 6 months and have stable disease. I have 2 tumors in my pelvis and one small area in my spleen. The tumors are growing a little but at a much slower pace than they otherwise would. So far the Taxotere is holding the cancer pretty much at bay. So that group of medications may possibly be of help to you. I hope so!!

Please keep us up to date on how you are doing. I know it is difficult not to worry about the future. But remember we are all here pulling for you and keeping you in our prayers. God Bless!! Eileen

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• By JenniferY
• Posted June 3, 2009 at 3:41 pm
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I am in shock right now. I live in Michigan and I found a lump on my neck and it turned out the origin was coming from my retroperitoneal cavity after testing and scans. There are cancerous lymph nodes throughout the area and my doctors were unsure of how to treat it. I went to all 4 top hospitals and universities in my state. They said it is a very very rare type of ovarian cancer, but its not on my ovaries or uterus ( strange ). I have the same thing Lance Armstrong had, but obvisiously not in my testicals. lol .... So they sent me to U of Indiana where they specialize in "rare tumor/cells. Well, after discussion with state to state , they were so unconfident about doing chemo ( BEP ), but they said do it anyways. I had 3 treatments, 5 days a week, off 2 weeks. After all that, my germ cell tumors were still there. The doctors sent my paperwork to a specialist in Indiana for surgery. Way too high risk and too many nodes to touch that area. They said specifically they have no other suggestions. So, I am pretty much living with Cancer and i cant do anything about it......My whole point of me writing all this is because Ive never heard of Doxil or Taxol...?? What states are all you from? ?

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• By Eileen1941
• Posted June 4, 2009 at 10:12 pm
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Hi Jennifer,

I am so sorry to hear about your situation! I have had treatment with both Doxil and Taxol. I have had the best response from the Taxol and a similiar medication, Taxotere. I receive my treatment at the GYN/Oncology Clinic at Presbyterian Hospital in Charlotte, North Carolina. They do have a second opion clinic here and they do accept self referrals at the GYN Clinic. The phone number for the GYN/Onc Clinic is: 704-384-8200. I'm sure if you contact the clinic they can put you in touch with someone who can help you get additional information and to set up an appointment if you want to come for an evaluation. You can also Google the medications: Doxil, Taxol and Taxotere and get some information from their web sites.

If I can help with any specific information, please let me know. Do you know the primary site of your original tumor? If it was not from the reproductive system or from a site that these medications are usually prescribed for that may be why these medications have not been tried on your cancer. But in my way of thinking, anything is worth a try.

Please keep us up to date on how you are doing. My thoughts and prayers are with you. Eileen

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