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neuroendocrine small cell carcenoma

AlisaD's picture
AlisaD
Posts: 2
Joined: Nov 2007

I am just looking for any survivors of this cancer out there or anyone else dealing with this cancer. Mine presented with a tumor on my cervix. We removed it along with a full hysterectomy and 50 lymph nodes, two of which had cancer. I am now undergoing 6 rounds of chemo (3 days on, 18 days off, 6 times) then I will do radiation. I am also following an organic, mostly raw foods diet along with supplements and herbs provided by an herbalist to help my body tolerate the chemo. I have a young son and am desperate to survive this. I know I am doing all I need to be doing. I am just looking for others out there dealing with this.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Jo-Ann,

Michael prefers Muscle Milk, but he eats like a horse, his appetite is good! He is eating all the stuff he felt guilty about before, I'm a little jealous. :) He still is losing weight though.

I have a number for Co-Pay Relief Program, for anyone who is taking Neulasta. If you call this number and tell them your husband has Chemo Induced Neutropenia,(Weakness from Neulasta) they will do an application to award him $2000.00. The program is yearly and it ends in July so after July you can apply for another $2000.00. The number is 866-512-3861. They are in Virginia and they open 8:30 Eastern time. Best to call first thing in the morning. I'm about to call.

Sooze

Update: I called and they told me to fill out the application online at www.copays.org. and look for online services, when I submit the form it goes directly to them for consideration. Good Luck!

joann p
Posts: 50
Joined: Apr 2012

Thank You so much for the information. My e-mail is nrz83@aol.com
jo-Ann

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

My email is msyezall@gmail.com

Another experience to report: We applied for SS Disability and the supplemental insurance income. Let me explain a little for those who don't know. SSA Disability, once you are approved, is available after a wait of 5 months. You can apply for SSI which gives you an income until the SSA takes effect. I "thought" I had applied for both.

1. We received an award letter for SSA. Great! I called to find out about SSI.
2. I was told I checked a box that said I didn't want SSI. I find that hard to believe.
3. They said I could get an appointment or take my chances by walking in the office. Since the available appointments were 2 months out, we went to the office. There is no way to apply online or find out if you qualify.
4.After sitting for 2 hours we were called, only to be told in 10 minutes that our income was $8.00 over the allowable amount to get SSI.

There is something wrong with that system!

I only put this here because I think others might value the info. There are many organizations out there that are helpful. I think we should share them.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

I have no idea how to delete them. My computer was having a problem.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Doctor's office just called and said there was a "Marked Improvement" in the tumors!! What once was 3cm is down to 1cm and there is NO I repeat NO progression! We are very excited! Michael's main complaint now is fatigue, he reports he feels about 70% back to normal. Some bone pain from Neulasta, and his white count remains high. Red count is down some so time to get some steaks!

Next week is 3rd. Chemo week and I know it will take it's toll on him. Considering everything I'm hoping it won't be as bad.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

We call Monday our LONG day. That is the day he gets both Cisplatin and VP16 (Etoposide) It takes about 5 hours. I see a huge improvement in his tolerance of the drugs. He is bouncing back much quicker and his appetite is less effected. The fatigue is still an issue but its improving as well. His white blood cell count has stayed consistent so they are taking him off Neulasta for the moment. It will be replaced by antibiotics. He has started to gain weight again and just in the last couple weeks has added back 10 pounds!

The next two days he gets just the VP16 and then we get to relax for another two weeks. I'll be back if there is anything to report.

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

Hi, I was diagnosed the 4. of June and was for my first chemo the 5. of June (i got a vena cava syndrome, so thats the reason for the time scedule -fast).

I living in Norway and are treated at Oslo University hospital in a Cancer center. As a first line treatment they have started with Cisplatin and Etoposide (Cist. for 2 days and Etopside for 3 days - 24 h. treatment) and I was finished with my second treatment of totally four, yesterday.

I am treated at the hospital in Oslo and get chemo for 24 h. for 3 days ( a`24 h) once every 4 weeks ( I got treatment 2 one week before, but normally it is one treatment in every 4 weeks).

In the moment I dont have symptoms of sicknes as loss of weight, fatigue, paint or any other effects of the cancer ore the chemo. The doctors said at for me it is only talked about time, but they dont know if it takes 3 months or 1 year....

I gess your husbond and me are in the same time scedule when it comes to treatment, and time for diagnose.

joann p
Posts: 50
Joined: Apr 2012

Sorry I haven't written for awhile, but between 2 jobs and chemo, well, where does my time go???? Frank finished session 3 last week, his WBC was 1.4 so he needed a Neulasta shot and the long day was even longer because he needed 1 extra hour of post hydration. He tolerated all 3 sessions amazingly. Repeat CT is July the 10th and our NP feels it will be good news.. he has gained 7 lbs since the start of his treatment. Also, there is another patient at our oncologist who is being treated for the same thing as my husband with the same treatment, who is doing so well, he is having a 3 month reprieve!!!! I hope that could be use someday!!!!! Have a great Fourth of July!!!!! It feels so much better to talk to somebody who can understand what I am going through!!!!!
Jo-Ann

joann p
Posts: 50
Joined: Apr 2012

Sorry I haven't written for awhile, but between 2 jobs and chemo, well, where does my time go???? Frank finished session 3 last week, his WBC was 1.4 so he needed a Neulasta shot and the long day was even longer because he needed 1 extra hour of post hydration. He tolerated all 3 sessions amazingly. Repeat CT is July the 10th and our NP feels it will be good news.. he has gained 7 lbs since the start of his treatment. Also, there is another patient at our oncologist who is being treated for the same thing as my husband with the same treatment, who is doing so well, he is having a 3 month reprieve!!!! I hope that could be use someday!!!!! Have a great Fourth of July!!!!! It feels so much better to talk to somebody who can understand what I am going through!!!!!
Jo-Ann

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Good to see people posting here. Hi Joann and AnneLene!
Anne it sounds like you are getting the same treatments. So far I haven't heard any negative results. This is awesome! We may have some really good news here!
Joann, Michael has gained weight as well. Michael no longer has to take Neulasta but he does have to be on antibiotics. The hydration has become an issue. AT LEAST 2 LITERS IN 24 HOURS!!! He's floating LOL. We were told after 6 treatments he would be in remission. For how long? No one knows.

So this other man who got the "reprieve" how many treatments did he go through? Good luck with the CT!!! Be sure and let us know!

Thanks for the support its very comforting to know we're not alone!

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

I belive the treatment this time will be good for all of us, but I will ask more question about the treatment in line two and look into different possebilities... I am told from different Doctors that the time I have left is from 3 to app. max 16 months, depending on the results from this treatment. I still dont have any symptoms from the cancer, either got any bieffects of the chemo and I find it rare/odd/strange what ever.... 3 months is already in August so Wow...

In the moment I am checking out different possebilities, and I gess I will have an interesting conversation after the next CT scan.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

I think to tell you things like that is detrimental. There is hope for people with this type of cancer! I don't know all the details of your case but please stay positive and don't give up. They are coming up with new stuff all the time. With the meds you are on being the same as what my husband is taking and our doctors are saying they don't know what will actually happen is quite different. They said they love it when their patients beat the odds. I think we will!!!

Michael is doing really well this week, next week starts 4th week of chemo. He has gained more weight and we have been walking in the park and going to festivals! I hope he bounces back quick after the chemo next week. See you then!

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

Dont worry I am always positive, and in addition this time I am also angry and that can bee a good combination in this case. I also ask one of the doctors if you find miracles and yes, they do (not many, but you find them). Every person react different on chemo so also that is supposed to be taken in to consideration in the end.

I have two chemo left of totally four and the next one start the 23. of July.... then is four days in the hospital were you get the chemo, 24 houers every day... One week after the chemo your immunesystem are in the botten and then your body start to build up again.

Then we are ready for some great fun, before next chemo start ;-)

joann p
Posts: 50
Joined: Apr 2012

So today, Frank had a repeat CT scan and here are the results: after 3 rounds of chemo, he has responded well and the tumors have shrunk, the set back is that is had blood clots in both lungs and is presently in the hosptial,being placed on anti-coagulants... but that's ok, it's just 1 hicup in this roller coaster ride!!! Hosp all is well with you!!!
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

That's wonderful news about the CT scan. Are the blood clots a related thing or is it just as you said a hiccup? How long does he have to stay in the hospital?

We are coasting along until next week and the 4th round.

Anna, be sure and let us know about your ct scan!

joann p
Posts: 50
Joined: Apr 2012

Sooze,
Blood clots are a normal side effect from chemo. They are small and Frank came home yesterday on Lovenox shots only 2 times and then Coumadin with repeat labs on Fri to see if the meds are working.I have toi tell you an amzaing story. I was taking care of a patient in the ED yesterday whose grandmother had the same exact cancer as our husbands, but the funny thing is, she had the same docotr as I, Although she lost her battle 2 years ago, diagnosised 5 years before that, I know that they have made much more advacne with the treatments, so it doesn't bother me when I heard she had passed. Now the other thing is that this patient does medical research for cancer... amazing the things he was telling me... Hope all is well with you and yours. keep up the fight, we are all in this together!!!!
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Please share some of the things this person told you about what research they did. It's never ending process to gain information.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Please share some of the things this person told you about what research they did. It's never ending process to gain information.

joann p
Posts: 50
Joined: Apr 2012

Oh I definately will!!!!!

joann p
Posts: 50
Joined: Apr 2012

This is the transcript of the show he did, I will send you the link,
jo
as we have been telling you here tonight, there is some good news to report in the fight against cancer, an experimental treatment for leukemia is having extraordinary results beyond any expectations. it's small so far but the results are big enough to get out to the world and tonight as our chief science correspondent robert bazell reports, if it hadn't been for one woman who suffered a loss, this very promising research might not have happened.

bill ludwig says doctors tell him without the experiment treatment he would have had only weeks to live.

i'm in full health, no cancer in my system.

he has gotten the experiment treatment. the results are so spectacular that many believe it could mark the beginning of a major advance in cancer treatment.

each of those patients, a one or two of tumor was eradicated.

it removes the blood cells and -- attach to and kill cancer cells and return them to the patients in one infusion.

how good were those results compared to your expectations?

the results exceeded our expectations quite a bit. our entire team is really excited. and as well, the patients are excited.

why only three patients? the research concept was so new that neither the national cancer institute would fund it. she and her husband started a charity to fund new ideas after their daughter-in-law kim died of breast cancer .

we wanted to do something more, hoped to do something more.

so here it's just full of leukemia and now it's gone. money from the drug companies is pouring in, not just for further tests on leukemia patients but to try on patients with other cancers. for now, three lives have been saved. robert bazell , nbc news, philadelphia.

Hide transcript

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Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

http://www.cancer.gov/ncicancerbulletin/051512/page5

I am greatly encouraged!!! The date on this article is May 15th 2012! I intend to ask our doctor about it on Monday.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

It's a good thing because people are posting but I wish we could archive some of the older posts.

Well, we were sent home yesterday because Michael's white cell blood count was too low. So it's back to Neulasta. They basically told us to go home and come back in a week without giving us anything or suggesting anything to get the white count up. I asked what if it doesn't go up by next week and they said they would give him a lighter dose of chemo then, and then a Neulasta injection... Seems odd to me. Needless to say we were very disappointed. Strangely enough Michael started feeling "bad" when we got home. Pains in the bones, maybe he suddenly started to make white blood cells? Fatigue and achy, I think a lot of it was worry and disappointment. We both haven't been sleeping well and it's been a little rough financially. We did get a $10,000. grant to pay for some co pays at the Oncologist's and fusion room.

I asked about the trial using white blood cells and HIV. They had heard of it and thought it had merit but suggested staying on course with the chemo drugs until we run out of options then start hitting the trails. At this point we agree. I am really looking forward to keeping track of this trail along with others so when we have to make a choice we will have the knowledge.

I hope everyone is having good results. Michael is seriously talking about getting back to work. Here's hoping.

joann p
Posts: 50
Joined: Apr 2012

This happened to Frank with the lsat session, his WBC went down to 1.4,but they did chemo anyway. Had the neulasta injection on the 4th day, and now is count is 30 thousand!!!!! I am presently sitting next to him, starting our 4th chemo session, day 1, the lonnnggggg day!!!
Keeping the faith for us,
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

I mean in the chemo room, we want this over with! Michael's was down to 200. They said they would have still done it at 500 but now we have to wait...It has been running really high is why they took him off of Neulasta.

Good luck to you this week and I hope Frank bounces back quickly.

joann p
Posts: 50
Joined: Apr 2012

Hey,
Is there any news of when they will re-start his chemo???? We are still watching the pulmonary embolus and monnitoring his PT/INR level's weekly. It was non-theraputic yesterday so they raised the Coumadin to 7mg daily. His white count was normal, 15.
Hope all is well!!!
In my prayers,
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Geez... after taking Michael off of Neulasta they put him on Levequin (spelling?) and that could have caused the drop in WBC. I'm a little miffed to say the least. It cost us a week!! They said they would "try again" next Monday. If his count isn't up then they will "cheat" and give him a lower dose of Cisplatin. Damn it! What if this causes the tumors to regroup? Not a happy camper!

joann p
Posts: 50
Joined: Apr 2012

Frank is on antibiotics for a tooth infection that not only lowered his WBC, but is causing his PT/INR levels not to be theraputic, but the pro's of the anitbiotics veruse the con's, an infection is really a good thing at this point!!!!! Keepingn you in my prayers.... remember, good things come to those who wait!!!!!
Jo

joann p
Posts: 50
Joined: Apr 2012

Frank is on antibiotics for a tooth infection that not only lowered his WBC, but is causing his PT/INR levels not to be theraputic, but the pro's of the anitbiotics veruse the con's, an infection is really a good thing at this point!!!!! Keepingn you in my prayers.... remember, good things come to those who wait!!!!!
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Counting our blessings is something we have gotten used to. This is merely a bump in the road. We are reading and researching the cancer fighting diets like Dr.Li's cancer starving diet. http://www.ted.com/talks/william_li.html See what you think!

joann p
Posts: 50
Joined: Apr 2012

This happened to Frank with the lsat session, his WBC went down to 1.4,but they did chemo anyway. Had the neulasta injection on the 4th day, and now is count is 30 thousand!!!!! I am presently sitting next to him, starting our 4th chemo session, day 1, the lonnnggggg day!!!
Keeping the faith for us,
Jo

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

Hi, I been in a music festival and one week at a summerhouse before CT and next treatment. The system is a little bit different here than in the USA, and I am supposed to get one treatment in four weeks and in three days (a`24 houer), at the hospital. In addition I take an injection with Fragmin every day to avoid problems with blood clots (they teach me how to set the injection).

The CT scan was good news today and the size of the cancer tumours was reduced with app. little less than 50% ... It is good news and also the doctors was very happy today, but my tumours is really big so everything else would have been scary. I still dont have any feeling of sickness or any bieffects of the chemo, so hopefully also this time the chemo will be nice with me ( I am in the hospital again for the third of totally four chemo).

Good luck to both of you and be careful with the blood clots....!!!

joann p
Posts: 50
Joined: Apr 2012

Glad to hear that chemo isn't holding you down, it shouldn't. Frank and I went to a wedding this weekend, his first event since starting cheo and loosing his hair. He was very apprehensive about going, but 1 hour into it, he relaxed, and had a great time!!!! We are on our down weeks, chemo session 5 starts on Aug 8th. Still on Coumadin for the blood clots!!!!! Keeping our spirits up that the tumors continue to shrink!!!
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Anne,that is excellent news and I'm glad to see everyone is continuing to get out and live life!

Michael was never a hat wearer but he is wearing hats now in response to the no hair issue. He has gotten several compliments on one of his hats that is quite sporty! ;)

4th week of chemo drawing to a close. Tremendous improvement is how the chemo is effecting Michael. In the beginning, he would go to Chemo in sweat pants and a t-shirt, unable to be comfortable in everyday clothes. There were times he was so weak he couldn't walk. The dizziness was debilitating as well. He took pain and nausea pills like candy. He has progressed to the point where he takes an occasional pain pill, and that's more for the port site that's giving him trouble. He drives to and from Chemo even though I still go with him. He dresses everyday clothes and he is in good spirits.

We have an appointment with his boss tomorrow and will be discussing getting him back to work.

When we go in for an appointment at the cancer center we see the doctor's RN most of the time. We have only seen our "doctor" a hand full of times, is this typical of anyone else? The reason I even bring it up is because I am seeing a pattern of responses from the RN. She either is rather defeatist in her attitude or she really doesn't know. It's hard to get a straight answer, she offers no hope. We asked about when to get the port removed after the 6th treatment and she said she would wait for 3 months to make sure the cancer didn't come back, and then she added, "and it will come back it's just a matter of when." It wasn't necessary to remind us of that. When we ask her about news on the clinical trails we read about he kinda poo-poos them. The doctor at least admits he doesn't know. Being a rare type of cancer and the fact that new things are coming out all the time he won't hazard a guess.

Which brings me to my next point. This is another process worth looking into:
http://www.youtube.com/watch?v=1qG_ZWs04es

mr steve
Posts: 286
Joined: Sep 2009

We saw the onc everytime we there, even if it was only in the infusion center she would always stop by and check on us. We did go thru the nurse the PA then the doc.

Trials are tricky at times due to the fact that certin criteria has to be meet. My wife went thru 2 of them. The first one there were great results, (no tumor growth for a year) but she could not tolerate it a 2nd time, when the tumors started to grow again, due to the side effects of the chemo and the 2nd trial there were no results. The thing to remember is that every person is different and the results that we had does not mean the your's would be the same because some of the other's had better and worse results.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

I fully understand that when you see these amazing results that there is ALWAYS the other side of the coin. It's a gamble no matter how you look at it.

I am slightly miffed that we are not seeing the oncologist every time. The RN doesn't have the knowledge he has. We will be saving all discussions of treatments for when we see him in a few weeks. We have a CT Scan next Monday and pray for good results,the last one was VERY encouraging.

P.S. Today the woman next to us in the infusion room was told a new drug had been approved for her type of cancer, I don't know what it was (the drug or cancer type). She was there to start a randomized trial and the doctor came and told her this drug was approved like literally 10 minutes ago and she was going to get the treatment. That's how on top of things they are. I am comforted by that.

joann p
Posts: 50
Joined: Apr 2012

Sooze,
When Frank goes for his chemo, we see either the oncologist or the NP. Mostly, the pattern has been oncologist on day 1, the long day, then the on day 2 and 3, we see the NP. Our NP's are wonderful and very very positive!!!!! When we went to start session number 4, (after the CT scan showed that the tumors has shrunk and the lung blood clots were found,)she said that the shrinking of the tumors were excellent and Frank was doing great!!!! Encouraging or what!!!!!
Well Sooze, I know all too well about the hair issue. This weekend was Frank's " maiden event post chemo with no hair." We went to a wedding of a good friend of our's son's. Frank was EXTREMELY apprehensive.. not knowing how people will react to him without hair,( he refuses to wear a hat, only when we are by the pool.)Well, about and hourand a half into the reception, while having a slow dance, he begn to cry and he told me he was so glad he went to the wedding, that at first he wass scared, but most of the people told me I look fantastic.. boy was I happy to hear that!!!
Now to go onto something else... since your husband has been diagnosed with cancer, do you feel like everytime you watch TV, read the newspaper or listen to the radio, you hear or read about some famous person dying from cancer, studies on places were cancer is highest, or if you have been diagnosed with cancer go to the cancer center!!???? Is it me, or am I just more in tuned to this??? Everyday, with everything I do, it seems that the word cancer appears and it really, really really sucks... not only at home, but at my job also!!!!!! Some day's are so depressing!!!!
Prayers and strength your way,
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

On the Chemo week we see the RN on 1st day then NO ONE the rest of the week. If we have questions they are available of course. Usually we see the doctor after a CT scan has been done; on the following chemo week. So we may have seen him Three times so far. It's not that she isn't positive sometimes. We usually have to ask a question to get a response, such as,"In your opinion, is Michael doing above average, average, or below average?" Then she will say above average. What I object to is when she says things that make us feel depressed as hopeless, such as "The cancer WILL be back." Maybe that's true, but we all kinda know that do to what type it is. There is nothing wrong with a little hope. As the oncologist says, "After remission, we'll see what kinda mileage we get out of this." That leaves it open to hope.

Yes, it's like when you are pregnant, everywhere you go or everything you see relates to pregnancy. LOL I think it seems that way because it's the focus of your universe at the moment.

Michael has had experiences like Frank did. Bless their hearts. At the beginning he was sure everyone was giving him "the look". Now he has accepted it and loves the compliments on his hat. He never even wore a ball cap before this. :)

My heart and prayers go out to all,
Sooze'

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

I am the one with cancer and also I think it is to much focus on the cancer. It is like it eaten up my life. I got a death sentence from the doctors, but in the other end:

-I dont have any bieffects from the chemo
-I dont feel sick at all (no sign of illness so fare)
-The chemo help a lot and prob. will help me to a longer life

My hair is gone, but my wig is looking ok. In addition to the wig I also use hats, hijabs and a kind of headdress (new ones like skaters use - it`s nice on the beach). You find photo in my blog ;-)

But I am still my self, I have hundreds of good friends out there in addition to a beatiful daugther, a life to enjoy with a lot of humor and warmness, music, sport (what is possible), men still turned around after me (with wig - they like hair hehe..), so way focus on cancer...??? Like you I also start to feel that the cancer taking over and in my case it is no reason for that. If it is true that my life is so short as they tell me, why cant I live and give a dam in the cancer?

I dont know if I am able to manage, but atleast I will give it a try, and I will try hard to get the cancer out of my mind and start living ;-)

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

I am the one with cancer and also I think it is to much focus on the cancer. It is like it eaten up my life. I got a death sentence from the doctors, but in the other end:

-I dont have any bieffects from the chemo
-I dont feel sick at all (no sign of illness so fare)
-The chemo help a lot and prob. will help me to a longer life

My hair is gone, but my wig is looking ok. In addition to the wig I also use hats, hijabs and a kind of headdress (new ones like skaters use - it`s nice on the beach). You find photo in my blog ;-)

But I am still my self, I have hundreds of good friends out there in addition to a beatiful daugther, a life to enjoy with a lot of humor and warmness, music, sport (what is possible), men still turned around after me (with wig - they like hair hehe..), so way focus on cancer...??? Like you I also start to feel that the cancer taking over and in my case it is no reason for that. If it is true that my life is so short as they tell me, why cant I live and give a dam in the cancer?

I dont know if I am able to manage, but I will try hard to get the cancer out of my mind and start living ;-)

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

Hi, unfortunately this is a part of the sicknes. The chemo will work for one or may two times before it stopp working. I have seen things in the hospital and met people with a destiny with much worse results, regarding to this kind of cancer.

I dont think I will get read of the cancer, but what I am hoping for is to find a way to make them freezing the growth of the tumors. And as you said I may will be inside/outside the criteria. Anyhow a good results can make me live for an other year, and then hopefully without to much treatment.

I like miracles, so you never know ;-)

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Michael's CT Scan came back great! We were a little nervous after having been sent home from Chemo a few weeks ago due to low white blood cell count. It moved everything back a week. So further shrinkage of the tumors and no progression!!! With #5 & 6 treatments left to go, Michael has returned to work part time and we both think it's having a good effect. He is feeling great, a little more tired than before all this began but things are lookin' good!

AnneLene's picture
AnneLene
Posts: 27
Joined: Jun 2012

Hi, first of all i like good news and it seems that your husbond also start to feel better (you feel better if you move around, not to much and not to less ;-)).

I been looking to different treatment and so fare I find actually Germany, Switzerland and Sweden as possibilities so fare (UK and Switzerland I dont know that much about, but Germany and Sweden I am quite shore about). Here is the link to the University in Uppsala (outside Stockholm ;-)).

I am looking forward to see what they planning for treatment as line two.... ;-)

http://www.medsci.uu.se/research/Cancer/Endocrine+oncology/?languageId=1

joann p
Posts: 50
Joined: Apr 2012

YEAH MICHAEL!!!!!!
SO happy to hear the great news.. seems like Michael and Frank are on the same track... We finish session #5 tomorrow.. CT scan after 3rd session showed shrinking of all tumors with the biggest in the left shoulder lymph node, it seems the tumors in the liver were very samll to begin with, no other organs affected. As I have said before, unfortunately, with my job, I deal with this alot.. on Mon, I was the intact nurse, i had a 54 year old man who had colon CA with met's to liver, given 6 months to live. After I triaged him, I broke own, cried like nobody's busines... it seems to be taking a toll on me, even though I try not to let it get to me, but, I am only human... the only saving grace is that Frank is doing great... and as I told him, this is a disease for the rest of his life, just like diabetes, heart failure or hepatitis, it lies low, then rears it;s ugly head, but we will fight it tooth and nail!!!
Hugs, prayers, and positive vibs,
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

http://www.ncbi.nlm.nih.gov/pubmed/14997763

This is a link that clinically describes almost to a "T" what Michael has. Although the treatment is slightly different. I found this highly encouraging. There is other information on this site and perhaps you can find your own specific situation.

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

http://www.ncbi.nlm.nih.gov/pubmed/14997763

This is a link that clinically describes almost to a "T" what Michael has. Although the treatment is slightly different. I found this highly encouraging. There is other information on this site and perhaps you can find your own specific situation.

joann p
Posts: 50
Joined: Apr 2012

Well, last week we finished round 1, session 6 of chemo. He is still on Coumadin and his level's are finally theraputic. He goes for a repeat CT scan on the 19th, and by the result's of the scan, the next course of treatment will be planned, whether we will have 2 more treatments or just evaluated bi-monthly, our oncologist play's caution to the wind and won't solidify a plan of action without the CT results, which is fine with me. Out oncologist is very happy with how Frank is tolerating the chemo, and that he doesn't show any signsor symptoms of cancer, hopefuly this is a good sign!!!! How is Michael doing??? Is he still into his hats????
Sending prayer's your way,
Jo

Sooze3821's picture
Sooze3821
Posts: 51
Joined: Jun 2012

Glad to hear everything is progressing well on your end! We are a week behind you so we finish up today with a Neulasta shot. Then like you say, we will be waiting for the results of the Pet/CT Scan. Our doctor is confident Michael will be in remission but he makes us aware it will most likely come back. We aren't so sure. We have been doing a lot of research and once it goes into remission we will be using diet to boost his immune system and hit it with antioxidants. Time will tell. He has said Michael was above average in response to chemo and after the first week, he too, tolerated it very well. He has been back to work almost full time, and the only indication he has cancer is hair loss, and occasional fatigue.

Michael is still sporting the hats and likin' it but he said he will be glad to get some hair back. What is coming back so far has been white and he's not happy about that. :)

Prayers all around for all of us!

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