Anyone else with cancer of unknown primary? I really need a buddy.

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Anyone else with cancer of unknown primary? I really need a buddy.

by my4jewels on Wed Jun 18, 2014 05:43 AM

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Hello, I am a 57 year old female with no family history of cancer, otherwise healthy. I found swelling in the left side of my neck and under my armpit in early March of this year. I had an ultrasound, which identifified some suspicious activity.  Followed by a chest Xray, and diagnostic mammo which showed nothing. I had surgery on April 8, and 9 lymph nodes were removed from the side of my neck. Pathology on those nodes showed that all were malignant and some of the cancer had spread out into soft tissue.. The results were that the cancer found was secondary, and poorly differentiated, which means it gave no clue as to the primary it came from, and very aggressive.  We proceeded with a CT scan, and PET scan, which came out clean, except for extensive lymph node involvement in my neck and axillary.  I was diagnosed with Cancer of unknown primary(CUP).

I live in the NE United States, so I was sent to Dana Farber Cancer Institute in Boston. I was seen by the thoracic department and by a head and neck surgeon. After careful examination by both departments, still no answers. My fast growing cancer was already producing new lumps in my neck by this time, and it was important to start doing something, anything. I felt so vulnerable, and knew I had to start fighting back against this horrible disease.

So far, I have had 2 chemo treatments of carbo/taxol. My 3rd chemo is tomorrow.  My oncologist says that my treatments are very high dose. I am scheduled for 6 treatment, every 21 days. I get a Neulasta shot 24 hours after chemo. I have lost my hair already. I find that I have a miriad of side effects during the 1st week after chemo, then start to feel a bit better, never quite well and more tired than usual.

The bone pain from the Taxol and Neulasta is excruciating. I have been prescribed several pain meds, none of which work. So I have severe pain from day 3 to 6. I also feel so shaky and dizzy for that 1st week someone has to stay with me. I have been constipated, had diarrhea, heartburn/indigestion, dangerously low blood pressure, and the fatique is almost debilitating. This past week, I have started experiencing neuropathy in my right hand, especially my fingertips, and I am told that it will probably get worse as my chemo continues.Right now, I am slightly anemic and my platelets are below normal.  My onc says he can’t give me a prognosis, so the uncertainty is very difficult to deal with.  He only says that he considers CUP to be stage IV cancer, since it has already metasticized.

I try to have a very positive outlook, laugh a lot, have a wonderful and supportive hubby of 38 years. Friends and family are preparing meals for us 3 x’s a week, which is a huge help.

I'd love to have a "cancer buddy" to go through this with, as I feel very alone dealing with this.  We don't have our own support groups like most other cancers, and most folks have never heard of it. 

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by cybercat on Sat Jun 21, 2014 04:20 PM

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Hi, my husband was just diagnosed with cancer of the head and neck, unknown primary.  He had a huge lymph node removed and they are unclear about the involvement of a 2nd one.  They are waiting on more tests to determine if they need to go back in and remove the 2nd one or not.

He is supposed to start radiation treatments next week.  He says he's had this lump in his neck for about 3 years and never mentioned it because it didn't hurt.........DUH

He is not one to chat on the computer so if you like, I can chat with you.

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by my4jewels on Sun Jun 29, 2014 05:55 PM

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Hi, cybercat.  I just found that you had responded because it went into my junk mail folder.  I am sorry to hear about your husband.  I'd be happy to chat with you.  We can keep each other company through this journey if you like.  For me, chemo was chosen as a 1st treatment, perhaps because I had a much larger involvement of my lymphnodes, neck and axillary.  

I am 1/2 way through my chemo, and I had a scan last week.  My onc said that the neck cancer is greatly improved and the chemo is working.  I will learn more at my appointment this week.  I don't know what is planned for me next.  Neck radiation can be extremely difficult.  Please let me know how your husband gets on with it.

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by cybercat on Mon Jun 30, 2014 12:11 AM

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what have been your side effects to chemo? How much more do you have to do?  We have an appointment tomorrow to discuss the plan of attack........

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by my4jewels on Mon Jun 30, 2014 02:39 PM

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My chemo treatment is commonly called carbo/Taxol. I also take a steroid called dexamethazone the night before, which can prevent a good night's sleep, but doesn't bother me.  There are also several pre chemo drugs on chemo day.  2 different anti-nausea drugs, more steroids, an antacid, and benadryl.  My infusion starts around 10 a.m. and last until 5 p.m. 

So far, I have had 3 chemo infusions.  My oncologist says that my treatments are very high dose. I am scheduled for 6 treatment, every 21 days. I get a Neulasta shot 24 hours after chemo to help with white blood cell production. I started losing my hair on day 15 following my 1st treatment. I find that I have a miriad of side effects during the 1st week after chemo, then start to feel a bit better, never quite well and more tired than usual.

The day after chemo is fine, mostly because the steroids are still in my system.  I have had no nausea or vomiting at any time.  The bone pain from the Taxol and Neulasta is excruciating. I have been prescribed several pain meds for this, none of which work so far. So I have severe bone pain from day 3 to 6. I also feel very shaky and dizzy for that 1st week.  Sometimes I have no appetite, and sometimes food and drinks just don't taste like they should.  I have been constipated, had diarrhea, heartburn/indigestion, dangerously low blood pressure, and the fatique can be almost debilitating. After my 2nd round, I started experiencing neuropathy in my right hand, especially my fingertips, and I am told that it will probably get worse as my chemo continues. The neuropathy went away, and hasn't come back.   I have also had some indiscriminate bloating.  Right now, I am slightly anemic and my platelets are below normal, but that will take care of itself.  I get my blood drawn every week to check my counts, and my immune system has been very stable, thanks to the Neulasta.  I also have to take my temperature every day.

I recommend that you have on hand: stool softeners and senekot for constipation, Immodium for diarrhea, pain relievers(strong pain relievers if needed), sleeping aids if needed.  Some say taking Claritin and/or benedryl help with bone pain.  I take them, but they don't seem to help me.

I hope this helps.  Just remember, everyone is different.  Please let me know how your appt goes.  I will be praying for both of you.

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by townie923 on Fri Jul 04, 2014 09:04 PM

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Hi There,

I am so glad to have found you!  My husband has recently been diagnosed with Cancer Unknown Primary.  We too live in the NE and he has had his first oncology appointment at a Dana Farber sattelite clinic. He is being referred to Boston. He is to start doing his chemo treatments next Friday. Story sounds so similar to yours...he thought he had a hernia...mass of lymph nodes in his groin removed in April. Extensive testing of the gastrointestinal areas and nothing. PET scan showed lymph nodes in neck, shoulder, abdomen and groin malignant. He will be given the same chemo (cocktail) that you received. They informed us that he will be given two treatments, a week apart, and then tested again.  I am having such difficulty explaining to family and friends that this is "unknown".  It is as if they don't want to accept this diagnosis. We too were very anxious to start some form of treatment.  Take care, be hopeful, please feel free to talk anytime!

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by my4jewels on Sat Jul 05, 2014 02:42 AM

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Hi, townie.  My CT scan taken last week says this, and I quote, "There has been significant response with near complete resolution of metastatic carcinoma".  My onc says there is actually a chance I may go into remission, which hasn't even been considered a possibility until now.  I wasn't tested until after my 3rd treatment.  I still have 3 to go.  My onc says I'll have another scan 2 months after I finish chemo, unless I notice anything going on.

Yes, it is difficult to explain this cancer to family and friends. It's hard enough for me to understand...  Because my chemo is dose dense, whatever that means exactly, I get it every 3 weeks, and a neulasta shot 24 hours later.  My blood is checked every week.  So far all of my numbers have been good.

I only had cancer in the lymph node chains that run through my neck and clavicle and in my axillary lymph nodes, only on the left side for both.  I will not be getting radiation afterwards because the area is too extensive.

I sincerely hope your husband does well with his treatments and has a great outcome. 

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by Shelley64 on Tue Sep 09, 2014 11:24 PM

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Hi Everyone,

I'm Shelley and I was diagnosed 7 years ago at age 42.  My4jewels your reaction to chemo is about the same as I had.  Believe me it does get better.  I think every side effect is worse in the beginning because of all the stress and fear that goes along with a new diagnosis.

I have been on weekly taxol and carboplatin and every third week Avastin for seven years now.  I have gone into "remission" three times now.  It lasted 7, 8 and 12 months.

I am doing very well so just know that it is possible!  I have several friends that have CUP also (I met some on here and some at treatment.)

I have a caring bridge site that tells my story.  http://www.caringbridge.org/visit/shelleycampbell  

Have you all used that for your friends and family?

I hope everyone is doing okay on their chemo.

Shelley

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by my4jewels on Wed Sep 10, 2014 03:13 AM

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Good to hear from you, Shelley.  Wow, I read your story, and you have had quite a time with cancer!  I am so glad you are feeling well.  I finished my 6 rounds of chemo 2 1/2 weeks ago.  Fatique is the only lasting effect now.  I have one area in my neck which has continued to grow instead of shrinking like everything else.  I will be having surgery next week to see what is going on with that area, CT scan shows a solid mass, so we'll see.  I'll be having another Pet scan in a month or so to see how the rest of my cancer has responded to the full course of chemo.

My CUP is adenocarcinoma, and my onc says it usually like a game of Whack-a-Mole.  As soon as you knock one down, another one pops up.  I sincerely hope that is not the case, and I am looking for remission, as we all are.

RE: Anyone else with cancer of unknown primary? I really need a buddy.

by Shelley64 on Wed Sep 10, 2014 12:55 PM

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I'm so happy for you!  I know cancer is bad and chemo is bad too but it didn't turn out to be as bad as I imagined.  And honestly (remember it's seven years for me) there have been a lot of good things that came out of this too.

My doctors have told me to think of this as a long term illness.  They hope to put me in remission and keep me there as long as possible but they always expect me to have treatment again - at least until new medications come out.

My cancer acts just the way your doctor told you, every time the PET lights up in a little different area.  It is crazy.

I'm so happy that you sound like you got through chemo intact :)

Shelley

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