iowacarcinoid

Just another WordPress.com site

New announcement coming out of University of Iowa Hospitals.

New announcement coming out of University of Iowa Hospitals. I have accepted a position on the External Advisory Board for this grant.

Researchers at the University of Iowa Holden Comprehensive Cancer Center have received the first-ever Specialized Programs of Research Excellence (SPORE) grant to study neuroendocrine tumors. SPORE grants are funded through the National Cancer Institute (NCI), part of the National Institutes of Health.

The five-year, $10.67 million grant is the only SPORE grant funding NET research.

http://www.eurekalert.org/pub_releases/2015-09/uoih-uoi091415.php

1 Comment »

Health Problems Associated with Carcinoid Cancer

We are finding that there are MANY additional health problems that are showing STRONG correlation with Carcinoid Cancer. These include, but are not limited to:

1. Thyroid Disease

2. Type 2 Diabetes

3. Autoimmune Diseases

4. Vascular constriction problems/issues such as: Tachycardia Arrhythmias, Variant Anginas, Printzmetal Anginas, Right Bundle Branch Block (cardiac), Migraine Headaches, Raynaud’s Disease, Gastroparesis, Idiopathic Intestinal Pseudo Obstructions, etc.

5. Carcinoid Heart Disease

 

Unfortunately, I, like many other Carcinoid Cancer patients, have all of the above.  Not all Carcinoid Cancer patients have all of these or any of these. The research has not yet been done on all of these yet either – mostly due to lack of research funding. However, we are noticing a much higher percentage of Carcinoid Cancer patients who have the above health conditions compared to the general population.

3 Comments »

Sept. 27th – Q&A Luncheon with Dr. O’Dorisio

Q&A Luncheon with Dr. O’Dorisio

Sept. 27th @ 1p in Iowa City

Please contact me at iowacarcinoid@yahoo.com to register.

2 Comments »

2014 Looking Ahead

Is it just me, or does this winter seem to be taking FOREVER to end?

We’re looking ahead this year to organize some events.  So far, we are planning the following:

1.  A Q&A Luncheon with Dr. O’Dorisio in Iowa City

2.  The 2nd Annual Carcinoid/NET Cancer Awareness Walk

Come join us on Facebook and be a part of our interactive group!  Just search on Facebook for “Iowa Carcinoid Cancer Connection”.  We’d love to see you there!

My Best,

Jen Holm

Leave a comment »

Happy 2014 Everyone!

We hope this year will bring good things for all of us!  This year for the Iowa Carcinoid Cancer Connection, we will be planning to have another Q&A luncheon with Dr. O’Dorisio in Iowa City and having our 2nd Annual Carcinoid/NET Cancer Awareness Walk!  Our Facebook group has become very interactive and a great place to meet and talk to others in the state of Iowa who have Carcinoid or other form of NET cancer.

Our Events Committee will be meeting soon to discuss other fundraising events such as a silent auction.  We have had items donated to our group for fundraising efforts.

I have volunteered to get “Carcinoid Cancer Connection” Facebook pages up and running for the 16 states that don’t currently have any support groups.  Those 16 states are:

1. New Mexico

2. Tennessee

3. Wyoming

4. Nebraska

5. N. Dakota

6. Kansas

7. Montana

8. Mississippi

9. Kentucky

10. Hawaii

11. Idaho

12. Alaska

13. Delaware

14. Oklahoma

15. S. Dakota

16. Wisconsin

So, if you have Carcinoid Cancer, or another type of NeuroEndocrine (NET) Cancer, you are welcome to join any of those Facebook (FB) state (local) groups.  Just do a search on FB for the state name listed above followed by “Carcinoid Cancer Connection” (ie: “Delaware Carcinoid Cancer Connection”).

We hope to meet you soon if we haven’t met you already!  We’re here to help…  SEA = Support, Education, & Awareness

Hoping 2014 brings wonderful things to you!

Jennifer K. Holm

Leave a comment »

For those on Facebook

New  support groups have been created on Facebook:
1. For those who like  FB
2. Support groups for those states that have no state group (see list  
below)
3. To offer carcinoid cancer patients in those states a place to  connect 
with other Carcinoid/NET patients "locally"

State support groups that have been added on Facebook (search for the state name 
then add  "Carcinoid Cancer Connection", ie: "Kansas Carcinoid Cancer 
Connection") for the following states:
N.  Dakota
S  Dakota
Wisconsin
Kansas
Nebraska
Oklahoma
Tennessee
Alaska
Delaware
Hawaii
Idaho
Kentucky
Mississippi
New  Mexico
Wyoming
Leave a comment »

Update:

Update: I had the big dr appt today. I have to have some more blood work done and another bone marrow biopsy (make sure I don’t have lymphoma, see if the sarcoidosis has spread to the bone marrow, and make sure the bone marrow is clear of any abnormalities). Then, I will start on the Methotrexate sub-q shots (in about 2 weeks). Within 3-6 weeks, I will start on Remicade. He agreed with me that it’s a double-edged sword… if I do nothing, this will not have a positive outcome. And we may not have a positive outcome with treatment either, but at least we’ll have tried the best treatment they can come up with for me at this time. They will be monitoring me closely for increased carcinoid cancer, and/or development of: lymphoma, leukemia, and melanoma.

Leave a comment »

What TO and NOT TO say to a Cancer Patient

PLEASE do NOT say the following things to a cancer patient or someone who is very ill:

1.  “It will all be okay, I just know it.” – No, you don’t.  No one does.  Just because you may want that statement to be true, does not make it so.  This is NOT helpful.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.
2.  “Someday you will put this all behind you” (to a stage IV patient) – If you are talking to a stage 4 patient, this statement is 100% FALSE.  Stage 4 patients will NEVER be able to put their cancer behind them.  They will be fighting it for the rest of their lives.  It may go into remission for a while, or it may not – but they will NEVER be free of their cancer.
3.  “Don’t worry, things will get better.” (to a stage IV patient) – please see #2 & It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.
4.  “So when will you be all better?” (to a stage IV patient) – please see #2 & It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.
5.  “When will your cancer be gone?” (to a stage IV) – please see #2
6.  “But you don’t look sick.” – just because we don’t fit the stereotype of what you THINK we should look like doesn’t matter.  Many of us are extremely sick behind closed doors.  There are times we will be bed-ridden for days.  Many people who are terminally ill “look good” and you’d never know it just walking down the street and looking at them that there is anything wrong.  Not everyone will look like they are from a concentration camp. It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.
7.  “Lance Armstrong cured his stage IV cancer. You can too.” – This is a fast and sure way to piss off a cancer patient.  Good for Lance.  Whatever!  This is not HIS fight, this is MY fight.  Do NOT compare me to others!  This idea that people can triumph over cancer with will power and an upbeat attitude is just crazy. There are all sorts of factors that contribute to why some people recover and some don’t. The truth is, some people just get lucky.  Instead, try to reassure the cancer patient  that it takes a team of people: doctors, family, friends, support teams, etc to help the cancer patient through this time and that they are not alone.
8.  “But I thought you had chemo and surgery last time. How could it be back? This is why people shouldn’t do chemo.” – This just flat out tells us that you have no clue what you are talking about.  There are no guarantees with chemo, but it’s the best chance we have.  It’s part of our fight.  We use the tools we have available to us to fight.  There are no guarantees with anything.  We’re doing the best we can and have faith in our drs that they are offering us the best possible options.
9.  “Do you think it was a waste to do chemo last time?” – see #8
10.  “Live in the moment.” “Be strong.” “Fight hard.” “Keep your chin up.” “Don’t give up.” “Attitude is everything.” – DUH!  First, we know this more than ANYONE.  We’re facing death.  Secondly, these feel like “canned” sayings and offer nothing helpful or meaningful.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.
11.  “We just need a miracle for you.” – Well, I just need to win the lottery too!  Not helpful.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.
12.  “If anyone can beat this, you can.” – We don’t always feel strong.  And just because we’re strong and fight hard does not mean we can beat it.  We will try our best, but that is all we can do.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

13.  “It could be worse, you know.” – REALLY?  We’re fighting for our lives.  How much worse could this get?  It’s already WAY more than enough.
14.  “Everything happens for a reason.” – just don’t…  and it’s not helpful at all.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.
15.  “It’s all part of a larger plan.” – again, just don’t… and it’s not helpful at all.  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

16.  “You’re only given what you can handle.” – According to who?  For those who are religious, this is NOT in the bible, although it’s a popular christian saying.  When we’ve been puking our guts out and have nothing left to give, this is not something we want to hear.

17.  “All you need to do is think positive.” – If you say this, we want to ring your neck and kick your ass! It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

18.  “Half the battle is the mindset. Be determined to beat cancer and you will.” – see #17
19.  “Now that you’ve been through this you’re due for some good things to happen.” – this too is irritating to hear.  No one said life is fair or that good things happen to good people.
20.  “I’m sure it’s fine/I’m sure it’s nothing.” – *SMACK!*  If it were “fine” or “nothing” it wouldn’t be called cancer!  It increases the patient’s sense of isolation, because it’s like telling him you don’t want him to talk about it.

21. “Well, you’ve been needing a vacation for a while and now [during chemo] you get to lie around and read books all day. What could be better?” – Are you serious?  Again, this is an ass-kicking statement.  Feeling like you’ve been hit by a truck multiple times, puked your guts out until your inner linings are raw and bleeding is no one’s idea of a “vacation”!

22.  “Well, do they think [the chemo] is going to do any good?” – Of course they do or they wouldn’t put us through it!

23.  “People choose their sicknesses.” – What?  What kind of crazy juice are you drinking?!?!  No one would CHOOSE to have cancer!

24.  “Put your faith in God” – PLEASE do not assume that everyone believes in the christian god – or wants to.  This is not a time to try to convert people.  As an Atheist, this has been my BIGGEST pet-peeve .  I’m fine with my religious beliefs and my choice NOT to believe, so don’t try to convert me.  27% of Americans do not identify themselves as christians.

25.  “Have you accepted jesus christ as your savior?” – This is not about religion, this is about our fight with cancer.  Those who want have already done this.  Those who don’t want religion or are of a non-christian religion do NOT appreciate this in any way shape or form.  And PLEASE do NOT try to use this time to convert people!  27% of Americans do not identify themselves as christians.

26.  “You should try this diet I heard about.”  “Here’s an article about how to “cure” cancer” – These are more ass-kicking comments.  If it’s worth the paper it’s written on, our doctors will talk to us about it.  There are a lot of companies and people out there who are trying to sell their “vitamins” and all sorts of “snake oil cures”.  Do not begin to think that you know more than our doctors.  Some people MIGHT be into seeking into alternative medicines – ASK first.  If the cancer patient says no, then do not bring any of this stuff up.

27.  “Do you wear pink or want a pink ribbon to wear?”  – If we’re not a breast cancer patient, NO!  And honestly, those of us who have a type of cancer OTHER than breast cancer get really sick of seeing and hearing about pink and breast cancer.  There are other cancers out there!  We often feel we get lost in all of the pink and feel like our cancer isn’t taken as seriously or feel like we’re being told that our cancer doesn’t matter.

28. “I’ll pray for you.”  “It’s in God’s hands.”  “Put your faith in God.” – If you know for a fact that the cancer patient is christian, then go ahead.  If you don’t know FOR A FACT what religion the cancer patient is, do NOT offer these comments.  For and atheist, it’s the equivalent of telling us to put our faith in the Easter Bunny or unicorns.  27% of Americans do not identify themselves as christians.

29.  “What do they think caused your cancer?” – Many cancer patients take this to say that you are somehow implying that they did something wrong or somehow “caused” the cancer.  A cancer patient doesn’t need to feel like they are to blame in any way for “causing” their cancer (real or perceived).

30.  “Now, now, don’t get yourself all worked up” – Cancer is some scary crap!  Cancer patients are going to have all sorts of feeling and may even feel overwhelmed at times. Allow the cancer patient to go through whatever feelings they need to go through.  Reassure them that you and others are there for them through this and that they are not alone.

31.  “Congratulations!  You’re done with chemo (treatment)!” – When treatment is finished, it can feel like there’s nothing more for the cancer patient to do but wait, and naturally he/she may feel anxious and uncertain.

32.  “We can beat this.” – WE?  Yes, you want them to feel like they are not alone in this whole thing.  But they are well aware that “mind over matter”

What you CAN say/ask:

1.  “What kind of cancer do you have?” – Showing interest and wanting to learn is good.

2.  “What type of treatments have you tried or are going to try?” – see #1

3.  “Are you interested in alternative medicines or treatments?” – If the cancer patient says “no”, then leave it alone.  If the cancer patient says “yes”, then feel free to continue down that path.

4.  “Are you religious/Christian?” – I don’t mind people asking me this.  But when I say “No”, I want that to be the END of that topic.  If the cancer patient says “yes”, then feel free to go down that path.

5. ” What is your prognosis?” “What stage are you at?”- Some cancer patients are ok with this question, some aren’t.  I’m Ok with it because again, it shows that you are taking an interest and wanting to learn.  It can also help you to understand how serious it is and what the chances of remission are – or at least you can look it up.

6.  “What is you cancer ribbon color(s)?” – offering to help spread awareness about their cancer is appreciated.  Keep a look-out for their cancer ribbon and the colors .  Cancer patients like getting things they can wear to show they are strong and fighting the battle of their lives.

7.  “Is there anything I can do to help?” – There is ALWAYS things cancer patients need help with.  ONLY offer this if you REALLY want to help.   Offering to help come over and clean someone’s house is a HUGE deal and is greatly appreciated.  And if you can offer to do it on a regular basis – it is one of the MOST appreciated things you can do to help a cancer patient.  If you can offer to help take the cancer patient to appointments, scans, treatments…  Offer to do their grocery shopping or run errands.  And if you can, offer these things repeatedly.  If they have dogs, offer to take their dogs out for them – especially after a surgery or during treatment.  Offering any of these things to a cancer patient is incredibly helpful and very much appreciated.

8.  “Are there certain foods you can’t eat?” – Offering to make meals for the cancer patient and their (live-in) family is always greatly appreciated.

9.  “Can I get your email or phone number?  I’d like to check on you (and offer help) to see how things are going?” – Offering to be there on a regular basis and offering a support system is going to be a very important piece of the cancer patients life.  Early on, they may not realize it.

10.  “Do you have a donations page or a CaringBridge account where I can try to help with donations or get updates on how you are doing?” – A support system is very important to a cancer patient.  Again, they may not realize how much they will need this in the beginning.  And if the cancer patient doesn’t have these things set up yet, it may put the idea in their head to get these things started.

11.  “How many people know?  Who all are you telling?” – This is a very important one.  The cancer patient may just be telling you , thinking you’ll keep it confidential.  Other s may be letting everyone know.  Sometimes shouting it from the rooftops is very therapeutic – it’s one thing breast cancer patients seem to do very well.

12.  “How are your mood and spirits holding up through this?” – This opens the door for a meaningful conversation.  As an outside person, do not let any of your own fears or hang-up about cancer keep you from helping those who might need you.  You’re not going to “catch” cancer by talking about it.

13.  “Did/do you have any symptoms?”  “What were the symptoms that caused you to go in to the doctor?” – This helps you better understand their cancer and what they are going through.

14.  “What kinds of things are you doing to help yourself to relax or find support?” – these 2 things are needed in the life and world of a cancer patient.

15.  How are you feeling now that treatment is over?” – Whatever they are feeling is OK.  Just be there for them.

The above is a collection of various thoughts, opinions, and articles.  I hope all of you find this information useful!

Leave a comment »

Nov. 10th – 1st Annual Carcinoid/NET Cancer Awareness Walk

DATE

Start: Sunday, November 10, 2013 @ 1:00 PM (CST)

ADDRESS
DMACC Lake, DMACC Ankeny Campus
2006 S. Ankeny Blvd.
Ankeny , IA 50023
REGISTRATION CLOSING DATE

Sunday, November 10, 2013 @ 1:59 AM (CST)

Register by OCT. 15 and be guaranteed a t-shirt!

 

Welcome to the 1st Annual Carcinoid/NET Cancer Awareness Walk/Run! The Iowa Carcinoid Cancer Connection and The Carcinoid Cancer Awareness Network have joined together to create/intensify awareness of NeuroEndocrine Tumors and Carcinoid Cancer among the medical community and the general public. Our purpose includes providing education, awareness and support for Iowa NET and Carcinoid Cancer patients and their families.  ALL proceeds will go towards intensifying awareness and education to people who suffer from IBS and Crohn’s (common misdiagnosis of Carcinoid/NET cancers) and the medical community.

 

Note:

Those who register AFTER Oct. 15th, will not be guaranteed a t-shirt.

SPONSORS

We would like to thank our sponsors for their support! Ankeny Animal and Avian Clinic, DMACC

All proceeds will go toward the awareness and education of Carcinoid and NET Cancers. Sign in at NOON and get your t-shirt.The average temperature for November 10th is 50 degrees – so come join us!!!*To be guaranteed a t-shirt, please register NO LATER than OCT. 15th!

 

Additional Date Information

12:00 PM sign-in

 

To Register:

https://www.active.com/register/index.cfm?FORCE_A2=yes&E4P=9cc992a9-9a97-44bd-a9d4-3595559fcdb2&E4TS=1380251480&E4H=70959cb63f3ba77aebb31c89fbd5f996&E4E=snrcz00000000&LTCLICKID=09_67859143_73d696b7-c998-40a9-9a2a-ac91f3fd7357&EVENT_ID=2111416&INT=29-110-1&E4RT=Safetynet&E4C=active&CHECKSSO=0&E4Q=e3096822-eb14-481a-9481-85ca62734c80&LTCMP=194590

 

To Donate:

http://www.active.com/donate/carcinoidcancerwalk

Leave a comment »

Update on my health

So after over a year of trying to figure out what I have in addition to Carcinoid Cancer, the consensus is Sarcoidosis.  It’s an autoimmune disease.  The medical community suspects that there are links between Carcinoid /NET Cancers and autoimmune diseases.  I currently know of one other person who has Lupus (another autoimmune disease) and Carcinoid Cancer.  I’m now listed as the 5th person in literary history to have Carcinoid Cancer and Sarcoidosis at the same time.

And if THAT isn’t rare enough, I have a very unusual presentation and advanced progressive case of Sarcoidosis.  The treatment for it is going to be Methotrexate and Remicade.  Remicade can cause my carcinoid cancer to increase in speed, cause me to develop Lymphoma, and know my immune system out.  So, yay to that…  (I’m being sarcastic)  If the disease doesn’t kill me, the treatment might.

I’m so sick of ER’s and hospitals….

Anyway, we do what we have to do, right?  And we keep moving forward and hoping for the best.

If you are a Carcinoid Cancer, NET cancer, or Sarcoidosis patient – contact me.  I’d love to talk to you and hear your story.  And if you are a Carcinoid/NET patient who lives in Iowa, join us out on FaceBook at “Iowa Carcinoid Cancer Connection”.

Email any time!

Jen Holm

iowacarcinoid@yahoo.com

Leave a comment »