CSN Login
Members Online: 16

Introduction Looking for Support!

Cole74
Posts: 23
Joined: Feb 2013

Hey all,

 

I am so happy that I have found a site that talks about long term survival, relapse, and support! I am having a bit of a hard time right now, have had a number of health stuff going on. Let me tell you a bit about me I was diagnosed with HD at the age of 13 in 1988 stage III A only symptom was back pain, after having gone through every test and told all my complents where in my head from the onset of symptoms to diagnosis took 3 years. Spleenectomy and ABVD 12 cycles followed. I was cancer free until I was 25 then was diagnosed with folicular carcinoma of the thyroid, again after complaining for a couple of years about constant fatigue etc. it was finally found and treated however, first the found the contained nodule through altrasound saying that it is highly unlikely to be cancer given that I was never treated with RT. But that given my history they would send me to have one lobe out and if they detemine it to be cancer which the should know in 15 min from romoving it that they will remove the other lobe...well 3 weeks after the first lobe I get a phone call saying um yeah turns out it is maligniant and we need you to have the other half out. Had the sugery follwed by I-131 drink to kill residule tissue. That has now been just over 10 years. 

 

K so now new stuff I have been feeling ill for a few month, bone pain, nasuea, fatigue, slightly swollen axillary nodes, and inner thigh nodes. Random low grade fevers on and off. Rash in center chest sores on upper thighs. Labs including ESR have been a little up and down but nothing drawing attention. I am on madifinial from my nurologist to combat fatigue which some days it helps other days not so much. I feel like I am obsessing lately about how I feel and think the Dr's are missing something. In the last 2 years I have spent 2 weeks at a time in the hospital because high platelets and white cell count not super high but platelets have been 100 normal is between 1 and 400 in canada mine have been 599 white cell count normal is between 4 and 10 I always run about 13 since I had my spleen out however at times they are 25. I was told that high platelets could be because I don't have a spleen. However, most research I have found says that you should return to normal levels. 

 

I can't seem to get my dr to order a CT..or do anything more then blood work which I know lymphoma is not always detected in the blood. So I guess I just need to talk with others who understand. I am just really fustrated! 

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

 I hear just what you are saying. I have been here for over 2  and a half years  and have heard everything about how easy is is to get medical attention to how ignorant some Drs. can be.  Knowing you went thru this all before at such a young age should be a blinking light for the Drs. to have you checked out asap. Evidently you fall into the latter half of ignorant Drs. I would really suggest finding another Dr. and then another if you can't get what you want. Your health is nothing to be played with. Of course it is not their health. Just telling it the way it is here. Lymphoma is very treatable, but it has to be treated if you indeed have that diagnosis. Let's hope not, but if you do it has to be treated. I was diagnosed in May of 2010 with Follicular stage 4 and I was scared to death. First thing I did was jump on the websites. That was a big mistake. Stay away from them. By the time you get done reading them if you are not too confused you will be trying to find a priest. Their outlook is so gloomy when in fact its just the opposite. They give you statistics. You are not a statistic, but a person. I have been in remission over 2 years now. It has to be determined what is going on so you can be treated for whatever it may be. There are people on here that can be very supportive. Stick with us and we will be here for you. John  

Cole74
Posts: 23
Joined: Feb 2013

Hi John,

 

Thanks so much for your reply. I do a lot of research on the net however I am very careful to read medical journals as opposed to standerd stuff. Being though what we have been through we are more keen to understanding what is going on with our bodies, and know when we just don't feel right. I am waiting on the results of a punch biopsy on my chest right now should have the results in a couple of weeks. So we will see. I have been told everything in my past that I am faking it, or it is all in your head, or you have a mild case of scoloisis etc. Before they actually end up going oops ok actually you are very sick, you have CANCER. I used to think Cancer ment a death sentence however, being a surivor 2 times I know that is not the case especially if found and treated early. I just recently contacted the Natianal Cancer Institutue and the Canadian Cancer Instutitue to see if there is any research studies being currently conducted on HD surivivors and long term effects. I would be interseted in participated in a study, to help raise awarness of the effects. 

 

Nicole

 

HD 1987

ABVD Treatment

veedub's picture
veedub
Posts: 42
Joined: Jul 2012

https://www.facebook.com/photo.php?v=525615210792991
and it's true, whatever doesn't kill you makes you stronger
COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

YOU GOT THAT RIGHT !!!!!!!!!!!!!!!!Cool

lianadw's picture
lianadw
Posts: 72
Joined: Jan 2013

Love this video, thank you for sharing it!

Cole74
Posts: 23
Joined: Feb 2013

That video ws amazing may just have to listion to that at least once a day. 

 

Thanks you everyone!! 

forme's picture
forme
Posts: 1158
Joined: Aug 2010

Thanks so much for sharing the video. Her smile and her strength really shine through.

veedub, you new picture is wonderful, you look so happy.

Lisha

jimwins's picture
jimwins
Posts: 2002
Joined: Aug 2011

Thanks for reminding and motivating us all, V - just how important ATTITUDE is.  

Kick cancer butt everyone!

savvy525
Posts: 1
Joined: Apr 2003

Hey Cole,

I understand your frustration.  I had HD when I was 20 in 1999, and also had ABVD.  I can also understand your frustration with your doctors.  Try going to another doctor, one that actually listens to your concerns and makes you feel heard.  Remember to stay calm and to always think positive.  A lot of what you have posted and said is fairly normal, now it's just time to find a doctor who will listen to your concerns and who knows about your prior diagnosis.  Remember to be positive!

GKH
Posts: 292
Joined: Jul 2012

What is HD? Hodgkins?

illead's picture
illead
Posts: 501
Joined: Aug 2012

Thanks Vee,

     That was the best. I am going to share it with Bill's onc nurses when he goes in Monday for Rit.  What would we do without  them!  Hope everyone gets to see that, it is so upbuilding.  Thank you all for your continued support.  Bill and Becky

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Great Video V...thanks for sharing! I truely believe I'm much stronger in many ways since being diagnosed. Saved this to my documents for future reference. Love...Sue

(FNHL-Grd2-stg3-typeA-Dx6/10-age62)

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Cole74,

I am a recurring HD Survivor from 1989 and 1994.  I have many Late Effects from the treatments.  One was Breast Cancer in 2007.  Because of my HD tx's, the only option was a double mastectomy.  In 2010 I found an Adult LT Followup Specialist.  What a difference it has made in managing all of my side effects such as cardiac and pulmonary issues. 

Yes, there have been are are many studies done on HD survivors as well as pediatric cancer survivors.  In fact, I have recently been included in two research studies that will be submitted to the Medical Journals. A Survivorship Guideline has been created based on a committees knowledge of us survivors!  It can be found here:  http://www.survivorshipguidelines.org/   This can be shared with your doctors to ensure you are receiving the recommended follow up based on the type of treatments you had. 

Also, I would encourage you to join the ACOR website specifically the LT-Survivors mailing list.  Here you will get so much info from survivors like you and me.  Currently there has been much discussion on Clinics and resources in Canada for LT survivors.  Let me know if you need help in navigating the ACOR website. 

All the best,

Cathy

Tcan
Posts: 2
Joined: Feb 2013

Hi Cole,

When I was 60 during the summer I had a tremendous sciatica right leg and making it numb on my right shin and back ache and I thought that it was from being overweight.  I went to my friend, Dr. Pete Hanson who is an orthopedic surgeon and he told me that it was a strained back and it made no sense to do an MRI - so he sent me to Bruce Innis for physical rehabilitation to correct the back problem.  I went for 6 weeks and during that time my back got worse to where I was losing function in my right foot.  I also signed up and went to Egosku clinic and did those exercises.  I had to lay in bed with a large foam square to hang my legs on to put my back in traction.  When Bruce put me in traction I gained function of the foot, but when he stopped I lost function (could not resist well against his pressure on my foot.)  So, he sent me back to Pete Hanson who was going to send me to Dr. Ghosh who is a neurosurgeon for a laminectomy.  Dr. Hanson ordered the pre op MRI at Grossmont Imaging. 

 

They called Dr. Hanson and said it was a lemon sized tumor next to L4-L5 about 5 cm large and had grown through the hole that the nerves come out of and had wrapped itself around the spinal roots and was causing the pain.  I checked in the next day to Grossmont Hospital where they gave me IV dexamethasone which made the tumor to shrink to relieve the back pain.  They fine needle biopsied it (that did not give them large enough tissue to see the architecture to make a diagnosis of which of the 40 types of Non Hodgkins Lymphoma NHL it was) - they looked at the biopsy and saw it to be NHL B Cell and full body CT revealed a grapefruit size 11 cm tumor on the spleen.  I flew out to the National Cancer Institute and met with Dr. Windham Wilson and their expert who could not say what type it was, but they thought it was probably indolent (slow growing) follicular type.  I returned and went to the UCSD cancer center and my Dr. was J. Castro.  He sent me to a radiologist who in Jan 2011 put me through 10 sessions (about 2500 rads) on the back to irradiate the back tumor and then I went back east to an Amish clinic and bought about $2000 worth of herbs, etc.  I was on oral dexamethasone for about 4 weeks which was a long time and I started to experience teeth movement so I weaned off that in Jan 2011.

 

I then returned to UCSD and in Feb 2011 started a monthly chemo or Bendamustine (Treanda) and Rituxin and Dexamethasone.   After 2 months a CT scan revealed it was working.  After 6 months with my heart hurting I decided to not continue with the last 2 sessions and stopped.  In June 2011 - I was PET negative, but still tumor masses were present.  I started on the Gerson juice regiment and I have continued till now drinking about 2.5 liters of the Gerson vegetable and fruit juice.  At the company we started to make an herb capsules and I started on Beta Glucan from Japan - all started in June, 2011.  In Dec 2011 - masses decreased and in June 2012 - masses were gone.  In March 2012 I did OKC (ozone, vitamin K and vitamin C) at Oasis for 2/week for 2 weeks and then 4 week rest and repeat and repeat again.  At that time I started on the nutraceuticals that Dr. Barroso recommended along with the Ciocalati Verdi drink.  This week I started on OKC 4 X/wk and then rest for 4-6 wks and then repeat and then repeat again.

Lucky_Horseshoe's picture
Lucky_Horseshoe
Posts: 15
Joined: Jan 2013

Hi Everyone!

It seems like that there is a lot of support in this group.  That is very nice!!!   I was diagnosed in January, 2010 with Stage 4 NHL Aggressive B Cell.  The tumors were everywhere in my abdomen.  It took 1 1/2 years for someone to figure out why I was so sick.  After surgery to remove part of my upper intestine, 8 rounds of RCHOP, and 3 rounds of RICE.  My stubborn cancer wouldn't leave me alone.  Even after my stem cell transplant in July, 2011, the stupid cancer came back in January, 2012.  I had an unrelated donor so all the doctors had to do was tick off my Graft Versus Host and it fought the good fight until the lymphoma went away.  I have had two clean scans so far.  My third is scheduled for March 4th.  However, with all of the side effects I have (and there is a lot), I am seeing numerous specialists to fix me.  My eyes, mouth, and skin are scarred and they aren't holding out a lot of hope that I will be back to normal.  After the awful rash that I had, I noticed some of my moles had changed.  I insisted on seeing a Dermatologist.  She found that most of the spots were nothing except one mole.  She took a biopsy and our local pathology lab could not determine exactly what it was so they sent it to the Mayo Clinic who couldn't determine what it was.  Both labs insisted that I have the mole removed and that it could be melanoma.  After breaking down for the millionth time, I had it removed last week.  Now I wait...and suffer with yet another slice of me that had to be taken out.  It has been a long haul and I just needed to hear good news and this site has provided some.  Thank you all for posting on this website so that I can see there is still hope for me.  I haven't worked since March, 2011 and maintain a pretty much agoraphobic life right now.  I have been to the ER twice in the last 6 weeks with fevers and pain.  They couldn't determine that anything was wrong.  One doctor gave me antibiotics saying that I had a viral infection.  This flu season has scared me to go out since I am still on immunosuppressants.  Thanks for listening.

 

anliperez915's picture
anliperez915
Posts: 747
Joined: Sep 2011

Hi Lucky,

Welcome to the group,

after reading your story, I can see that you're a Strong persong! You have been through so much! Hope your scan comes back squeaky clean and that you stay like that forever! Please let us know the results, take care!

Sincerely,

Liz

Lucky_Horseshoe's picture
Lucky_Horseshoe
Posts: 15
Joined: Jan 2013

I just thought I would give an update.  I had my 3rd PET scan and it came back negative.  YEH!!  All the skin that they took came back "margins clear".  I don't know what to celebrate first.  My daughter's birthday was last week and I actually joined in the festivities.  The last two years I was too sick.  Slowly but surely, I think she is getting her Mom back.  Not the same Mom; but, a Mom that is in remission.  I still get really tired when I try to do too much and they have taken me off the steroids.  I am ecstatic about the scan results and living in the moment right now. 

 

allmost60's picture
allmost60
Posts: 3162
Joined: Jul 2010

Hi Traci,

 Thats wonderful news! We are definetely changed forever, but once we accept our "new normal", things don't seem quite so scary. Happy belated Birthday to your daughter...feels good when we can start participating in normal activities again! I'm still fighting the fatigue, but have learned to scale back my chores and not expect so much of myself. Take care and enjoy your wonderful news!

Much love...Sue (FNHL-2-3A-6/10)

illead's picture
illead
Posts: 501
Joined: Aug 2012

     Welcome to the site.  Yes, you are right, it is very supportive and comforting here.  Glad you found us.  Wish we could say something knowledgeable but others will follow who know more and be able to give you some insight.  Bill has Mantle Cell lymphoma which does not have a good prognosis but the initial chemo works wonders and he is in remission and feeling great.  In the meantime they are making good inroads in their research of not only MCL but many lymphomas, so there is room for much optimism.  Always keep that foremost in your mind. Don't know if you are the girl or guy, but you look so young to be facing this with so many problems to boot.   Please know that we all care.  Bill and Becky

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network