Introduction Looking for Support!

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!

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

veedub said:

check this out

https://www.facebook.com/photo.php?v=525615210792991

and it's true, whatever doesn't kill you makes you stronger

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

illead said:

super video

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

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)

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.

     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

Lucky_Horseshoe said:

I'm New

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.

 

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.