Decisions no one should ever have to make.

I've now had a couple of days to try and wrap my head around all that has happened and I gotta say, I'm still torn on a solid course to chart. Each option before me has it's merit's and thus makes it a difficult decision. Which ever option I decide to choose it will not be without putting hours of research and thought into it.

You know, you think you know how you will handle this stage when you get to it, but let me tell you, you only think you do. It is so much more difficult than one could imagine. After all, it's your life you are making a decision about. About which options will give you the best chance and least side effects for a prolonged remission.

To recap the current options I am considering they are, and are in no order of preference;

A) Watch and Wait.
(The following information is from www.lymphomas.org.uk)

Many people with lymphoma will not have treatment, sometimes for prolonged periods
of time. This can be hard to understand – it is not what most people expect of a cancer
diagnosis, especially when we hear so much about the importance of early cancer treatment.
But for many people, no treatment is the best option. Scientific evidence tells us that
in some cases ‘watch and wait’ is the best choice, and that immediate treatment is not
necessarily a good thing.
This article will discuss:
• what is meant by ‘watch and wait’
• when ‘watch and wait’ will be recommended
• the advantages and disadvantages of ‘watch and wait’
• what ‘watch and wait’ involves
• the future for ‘watch and wait’
• what you can do to help yourself.

What is meant by ‘watch and wait’?

‘Watch and wait’ means a period of time when you have no lymphoma treatment.
You have regular appointments with your specialist who will monitor how you are feeling
and check for changes in your lymphoma. Treatment will be delayed until you need it.
You may hear it called ‘active monitoring’.
Treatment will be delayed until:
• you start to develop troubling symptoms
• your enlarged nodes start to change significantly
• test results suggest that major organs or bone marrow are affected.
Results from clinical trials tell us that the average time from diagnosis to
commencement of treatment is approximately 2-3 years. However some people can
carry on for many years without needing any treatment.
People often misunderstand ‘watch and wait’:
• It does not mean that your disease is too advanced to treat.
• It does not mean that you are too old to be treated.
• It means that it is in your best interests to keep an eye on the situation and to save
treatment for when it is necessary.

When will ‘watch and wait’ be recommended?

‘Watch and wait’ is most often used for low grade non-Hodgkin lymphoma, particularly
follicular lymphoma. Follicular lymphoma makes up about 25% of all non-Hodgkin
lymphomas, so about a quarter of people with non-Hodgkin lymphoma are likely to
experience ‘watch and wait’ at some stage.
Low grade non-Hodgkin lymphoma can grow very slowly, perhaps over many years. It can
cause few problems, even at an advanced stage.
‘Watch and wait’ will be recommended for people who:
• feel well
• have no distressing symptoms
• have enlarged nodes that are not changing quickly or causing problems
• have no problems with major organ function.
‘Watch and wait’ can also be used for other low grade lymphomas, including
Waldenström’s macroglobulinaemia and marginal zone lymphoma.
It is also a common way to manage chronic lymphocytic leukaemia.
Mantle cell lymphoma (MCL) accounts for less than 5% of all non-Hodgkin lymphomas.
Mantle cell lymphoma usually behaves like an aggressive lymphoma but in some cases it
will be more indolent. Watch and wait might be suitable in these cases, particularly if the
person concerned is not fit enough for immediate treatment.
A rare type of Hodgkin lymphoma, known as lymphocyte predominant Hodgkin
lymphoma, can be slow growing. Some doctors suggest that this disease could also be
managed with ‘watch and wait’. (This is my current cancer)

Advantages and disadvantages of ‘watch
and wait’

Evidence from clinical trials tells us that the long term survival of people with
slow growing disease on ‘watch and wait’ is just as good as those who commence
treatment earlier.
The main advantage of ‘watch and wait’ is that you are not exposed to treatment before
you need to be. There are several advantages to this.
Your quality of life may be better without having to go to the hospital for treatment, and
without treatment side effects. Most people who are managed on ‘watch and wait’ enjoy
a long period of good quality of life before treatment begins and respond well to
treatment when this becomes necessary.
Although lymphoma treatments can be effective, they can have unpleasant and risky
side effects. One of the particular problems with chemotherapy, for example, is that it
suppresses the bone marrow.
Suppression of the bone marrow reduces healthy white blood cells, meaning that you are
at risk of infection.
‘Watch and wait’ means that you are not exposed to the risks of chemotherapy before
you need to be.
Some people will have several courses of chemotherapy treatment over time. Lymphoma
cells can become resistant to chemotherapy with repeated courses of treatment.
By delaying chemotherapy until necessary, a watch and wait approach will mean that the
potential for resistance is kept to a minimum.
The main disadvantage of ‘watch and wait’ is that some people find it hard to cope
with. It can be difficult to have to live with a disease and wait for it to get worse before
something is done about it. Some people find it hard to get on with life and feel worried
and anxious.
What does ‘watch and wait’ involve?

your particular situation and decide on a plan together.

‘Watch and wait’ will usually mean:
• regular outpatient appointments – typically every 3 – 6 months
• regular blood tests and possibly repeat scans
• close observation of your enlarged nodes and general health.
You will have an important role to play. You will know what is normal for you and you
will be the best judge of when your illness is changing. You will be expected to keep your
medical team informed of any changes. Get in touch if you are worried about anything.
You can always change your appointment if you need to.

The future for ‘watch and wait’

Clinical trials continue to examine the use of watch and wait. A National Cancer
Research Network (NCRN) study is currently comparing ‘watch and wait’ with rituximab
for people who are well with no symptoms. The study has completed recruiting patients
and the information is being collected and analyzed. It will be a few years before the full
results of this study are known.
In the meantime, there is plenty of evidence to support the continued use of ‘watch and wait’.
What can I do to help myself?
There is no evidence to suggest that doing any one thing in particular will keep your
lymphoma at bay. But evidence does suggest that taking good care of yourself and living
well is important for good health in general. The following ideas might help.
• Eat a healthy diet and try to maintain a healthy weight.
• Try and keep to recommended alcohol intake per week and if you smoke give up.
• Take regular exercise. This will also help to improve fatigue, which is a common
experience for people with low grade lymphoma.
• Try to reduce or limit those parts of your life that are stressful or difficult. Take stock
of your responsibilities – identify things that you need help with or worries that need
some attention.
• Consider reducing working hours if you find your current hours are too demanding.
Ensure that you have time for relaxation and doing things you enjoy.
• Continue to make time to socialize and spend time with the people that
matter most to you.
• Be honest about your feelings. Talk to people about how you feel and seek help if you
are finding feelings hard to cope with. Try to avoid ignoring feelings that are persistent
and troublesome. If you think you might be depressed or if someone close to you
thinks you are depressed, talk to a doctor or nurse and seek help.
The Lymphoma Association can provide a booklet called ‘Living with
lymphoma’, with more information about these subjects.
Please telephone our helpline.

Conclusion:

Some people will find it hard waiting until their illness flares up without having treatment.
Try to remind yourself that having treatment would mean having to cope with side effects
without much benefit in the long term.
People who have been on ‘watch and wait’ say that the best thing to do is to try and
make the most of each day. Live well while you feel well. Think of ‘watch and wait’ as
an opportunity to maximize your quality of life – to actively take good care of yourself
rather than passively waiting for treatment to begin.

Acknowledgements:

The Lymphoma Association would like to thank Natalie Singer for her contribution to
this article. Natalie is a Macmillan Haemato-Oncology Clinical Nurse Specialist at the
West of Scotland Cancer Centre in Glasgow.
References:
(1) Evans L Hancock B. Non Hodgkin Lymphomas. The Lancet. 2003; 362 (9378): 139-146.
(2) Magrath IT. The Non-Hodgkin’s Lymphoma: Second Edition. 1997. London Arnold.
(3) McLaughlin P. Progress and promise in the treatment of indolent lymphomas. The Oncologist. 2002; (7)
217-225.
(4) Ardeshna K, et al. An intergroup randomized trial of rituximab versus a watch and wait strategy in
patients with advanced stage, asymptomatic, non-bulky follicular lymphoma. NCRN Watch and Wait
study. 2007.
 (5) Rule S. The clinical management of mantle cell lymphoma. British Journal of Cancer
Management. 2005; 2(2) 5- 9.
(6) Franklin J, et al. Lymphocyte predominant Hodgkin’s disease: Pathology and clinical implication.
Annals of Oncology. 1998; 9(5) 39-44.
(7) Oscier D, et al. Guidelines on the diagnosis and management of chronic Lymphocytic leukaemia.
British Journal of Haematology. 2004; 125(3) 294-317.
(8) Ardeshna K, et al. Long term effect of a watch and wait policy versus immediate systemic treatment for
asymptomatic advanced- stage non-Hodgkin lymphoma. A randomized controlled trial. The Lancet. 2003;
362 56-522.


B) Start Chemotherapy now.
Then there is the option of proceeding with chemotherapy right away, most likely GDP Regimen which would only be used to keep the disease at bay. Not recommended at this time, but should I choose this option my oncologist would start treatment immediately. However as you can see by clicking on the GDP Regimen link above, it is a very toxic treatment with many side effects. I've been through it once and know first hand, and not sure it is something I want to go through if it is not necessary at the moment.

C) Clinical Trial option 1
From here we go on to the option of a clinical trial in Detroit Mi. at the Karmonos Cancer Institute.

The trial my oncologist is looking into for me is the SGN-35 trial. 

Brentuximab Vedotin (SGN-35) for Relapsed CD30-Positive Lymphomas

Anas Younes, M.D., Nancy L. Bartlett, M.D., John P. Leonard, M.D., Dana A. Kennedy, Pharm.D., Carmel M. Lynch, Ph.D., Eric L. Sievers, M.D., and Andres Forero-Torres, M.D.

N Engl J Med 2010; 363:1812-1821November 4, 2010

Background

Hodgkin's lymphoma and anaplastic large-cell lymphoma are the two most common tumors expressing CD30. Previous attempts to target the CD30 antigen with monoclonal-based therapies have shown minimal activity. To enhance the antitumor activity of CD30-directed therapy, the antitubulin agent monomethyl auristatin E (MMAE) was attached to a CD30-specific monoclonal antibody by an enzyme-cleavable linker, producing the antibody–drug conjugate brentuximab vedotin (SGN-35).

Methods

In this phase 1, open-label, multicenter dose-escalation study, we administered brentuximab vedotin (at a dose of 0.1 to 3.6 mg per kilogram of body weight) every 3 weeks to 45 patients with relapsed or refractory CD30-positive hematologic cancers, primarily Hodgkin's lymphoma and anaplastic large-cell lymphoma. Patients had received a median of three previous chemotherapy regimens (range, one to seven), and 73% had undergone autologous stem-cell transplantation.

Results

The maximum tolerated dose was 1.8 mg per kilogram, administered every 3 weeks. Objective responses, including 11 complete remissions, were observed in 17 patients. Of 12 patients who received the 1.8-mg-per-kilogram dose, 6 (50%) had an objective response. The median duration of response was at least 9.7 months. Tumor regression was observed in 36 of 42 patients who could be evaluated (86%). The most common adverse events were fatigue, pyrexia, diarrhea, nausea, neutropenia, and peripheral neuropathy.

Conclusions

Brentuximab vedotin induced durable objective responses and resulted in tumor regression for most patients with relapsed or refractory CD30-positive lymphomas in this phase 1 study. Treatment was associated primarily with grade 1 or 2 (mild-to-moderate) toxic effects. (Funded by Seattle Genetics; ClinicalTrials.gov number, NCT00430846.)

Supported by Seattle Genetics.

Disclosure forms provided by the authors are available with the full text of this article at NEJM.org.

We thank Peter Senter, who led the team effort for developing the brentuximab vedotin drug-conjugate technology, Hong Ren and Yin Yang for statistical guidance, and Roberta Connelly for assistance in the preparation of the manuscript under the sponsorship of Seattle Genetics.

Source Information

From the Department of Lymphoma and Myeloma, University of Texas M.D. Anderson Cancer Center, Houston (A.Y.); Washington University, St. Louis (N.L.B.); Weill Medical College of Cornell University, New York (J.P.L.); Seattle Genetics, Bothell, WA (D.A.K., C.M.L., E.L.S.); and the University of Alabama at Birmingham, Birmingham (A.F.-T.).

Address reprint requests to Dr. Younes at the University of Texas M.D. Anderson Cancer Center, 1515 Holcombe Blvd., Houston, TX 77030, or at ayounes@mdanderson.org. 

D) Clinical Trial option 2.
Then there is one final treatment that would only be available to me in the U.S. as well, and is one that just completed clinical trial and that is, Bendamustine + Rituxan

Bendamustine Plus Rituximab Is Effective and Has a Favorable Toxicity Profile in the Treatment of Mantle Cell and Low-Grade Non-Hodgkin's Lymphoma

Mathias J. Rummel, Salah E. Al-Batran, Soo-Z. Kim, Manfred Welslau, Ralf Hecker, Dorothea Kofahl-Krause, Klaus-M. Josten, Heinz Dürk, Andreas Rost, Michael Neise, Ulrich von Grünhagen, Kai U. Chow, Martin-L. Hansmann, Dieter Hoelzer, Paris S. Mitrou

From the Med. Klinik II, Johann Wolfgang Goethe-Universitätsklinik, Frankfurt/Main; II. Med. Klinik, Krankenhaus Nordwest, Frankfurt/Main; St.-Marienkrankenhaus, Hamm; Medizinische Hochschule, Hannover; Städtische Kliniken, Darmstadt; Onkologische Schwerpunktpraxen in Aschaffenburg, Wiesbaden, Krefeld, Cottbus, Germany

Address reprint requests to Mathias J. Rummel, MD, PhD, Department of Internal Medicine, Hematology/Oncology, University Hospital, Theodor-Stern-Kai 7, 60590 Frankfurt/Main, Germany; e-mail: rummel@em.uni-frankfurt.de

PURPOSE: The aim of this multicenter-study was to evaluate the progression-free survival, response rate and toxicity of the combination of bendamustine and rituximab (BR) in patients with mantle cell or low-grade lymphomas in first to third relapse or refractory to previous treatment.

PATIENTS AND METHODS: A total of 245 courses (median, four courses per patient) were administered to 63 patients. Bendamustine was given at a dose of 90 mg/m² as a 30-minute infusion on days 1 and 2, combined with 375 mg/m² rituximab on day 1, for a maximum of four cycles every 4 weeks. Histologies were 24 follicular, 16 mantle cell, 17 lymphoplasmacytoid, and six marginal zone lymphoma.

RESULTS: Fifty-seven of 63 patients responded to BR, corresponding to an overall response rate of 90% (95% CI, 80% to 96%) with a complete remission rate (CR) of 60% (95% CI, 47% to 72%). The median time of progression-free survival was 24 months (range, 5 to 44+ months), and the median duration of overall survival has not yet been reached. In mantle cell lymphomas, BR showed a considerable activity, achieving a response rate of 75% (95% CI, 48% to 93%) with a CR rate of 50%. Myelosuppression was the major toxicity, with 16% grade 3 and 4 leukocytopenia. Thrombocytopenia was rare, with only 3% grade 3 and 4.

CONCLUSION: These results demonstrate that the BR combination is a highly active regimen in the treatment of low-grade lymphomas and mantle cell lymphomas


So, as you can see I have my work cut out for me with these options to ponder. One thing is certain. With all that has gone on recently, I will be taking a little time "away from it all" with Brenda. Then we will make a decision on which route would be best to take. 

I would like to thank all of those who have been there for me/us  with suggestions and help with getting us through this period. Just know, that I take all the assistance I have gotten with regard to treatment options very seriously and consider them all with the help of my medical team at the cancer center. Stay tuned more to come soon. Love & hugs to everyone no matter where you are in your journey.
Tim, xxx

Hope and Faith Pt. II

First, let me point out that this is NOT the end of a journey yet, but a significant move to a new "level" of care. 

So today the hope and faith we were looking for did not quite turn out the way we would have liked. First stop of the day was at Brenda's lawyers office for a mediation hearing with the other parties insurance company. When we first sat down with the lawyer he explained to us how they would try to intimidate her into early submission with a low settlement.

When Brenda's lawyer put a number in front of us, he told us it might not be what we had in mind but was what he thought might be fair, as far as we were concerned we were exactly on the same track. Brenda was not looking to break the bank but just to get a fair settlement that would put us in a position to replace our vehicle with a brand new one. Something neither one of us has never done is owned a "brand new" vehicle.

After four hours of the mediator going back and forth with offers and counter offers, we finally "settled" . Not anywhere even close to where we thought we would end up but Brenda just wanted it all to be over and after a good discussion with her lawyer and the mediator, we decided it would not be worth taking a chance at going to trial and getting less or even nothing at all! We can tell you this our dreams of owning our very first "brand new" vehicle were gone, just not going to happen with the settlement we got.

Ontario insurance laws totally blow by the way, you see, they, the insurance company your suing, gets the first $30,000.00 of any lawsuit filed against them. Yes, you read right, they get the first $30,000.00 as a "deductible". Then there are the lawyers fees, mediators fees, disbursements, and taxes. I guess you could actually end up owing them money!!. So we headed home licking our wounds and kicked up our feet for an hour until it was time to leave to see my oncologist to find out my fate next.

We met with my oncologist and after going over my entire history carefully reviewing all the drugs and radiation that I have had from day one, and looking at options available, the following was clear. I am dealing with a chronic recurring cancer and curative options have become few. My body has been through hell with all the treatments that I have had , and has no doubt been weakened. Now this does not mean we will not try something new or a trial that shows promise, but I too have to realize with all the toxicity that has gone through me there is only so much one can handle.
 
So, the question is this. Do we do something now, or do we do a watch and wait and do something when things have progressed to a more advanced state. I'm told the effect would be the same, and that if I did it now and put my body through all that chemo and what it does to you, then say, had to do it again in a short period of time it would most likely wear me down quicker. So why not wait and do it when it is more needed and save my strength to fight a battle that might be tougher.

Well, I know you are all scratching your heads and screaming WTF!! Yeah, so am I. I guess there are many arguments there, I know I had a few, but there is some sense in it all. I also have to note that my oncologist is backing what ever decision I make. Treatment now, treatment later, she will do either I just have to give the word. She is working on some things for me and is not throwing in the towel so to speak. She is actually looking at a clinical trail over in Detroit for me, and is going to do her best to get me enrolled in it. It is an SGN-35 trail and something she presented to me even before I showed her what I had come up with. I know of SGN-35 and it has showed great results to date and holds great promise. Now, just to get me enrolled.

She does want me prepared either way so I will be working more closely with my social worker at the cancer center to prepare for anything that my come of this. She also took the information I presented with regard to some other treatments that are holding great promise, and is going to be taking a closer look at those as well. So the ball you can say is in my court.
 
A lot has happened today, and it's a lot to digest. So we will do this, we will take some time to consider everything that is being proposed. I know I have a great group of you out there that are looking out for me as well. Brenda and I are fortunate to have you, and we consider each and everything that you put forth to us. We also present it to my team at the cancer center for consideration. But just for now we are going to take some time and think it all over while enjoying life and maybe even a well deserved vacation that has been put on hold too many times!

Hope and Faith

Tomorrow can be a great day for us or the bottom could fall out. I am fighting and struggling with myself to remain optimistic. Not easy. 

   
Tomorrow begins early in the lawyers office where Brenda has a mediation hearing with regard to the head-on collision she was in almost four years ago now. NOT her fault. I also truly believe that our current status of being vehicle less is the very fault of that accident. Our vehicle has had major electrical problems since, they were reported to our agent but discounted when it came to doing something about it. So this is stress number one for the day.  

Tomorrow afternoon I will be meeting with my medical oncologist to find out my fate. Again something I am trying to remain optimistic about, but in reality know where this is most likely going to go. I've been through this scenario with this oncologist last year at this time. The conversation centered around three treatment options, 1-ABVD, 2- GDP, 3- BEACOPP.

It was pretty much this exact time last year that I was diagnosed with NLPH and went over these options, however it was decided that being a stage 1 situation at that time radiation would give me the best odds for a curative effect. Of those chemo options numbers 1 & 3 were immediately taken off the table as they contained Adriamycin (Doxorubicin) of which I've had my lifetime dose already. That left GDP which at best I was told then would only keep it at bay. 

I have been doing research on what is new out there, my dilemma however is my treatment will be restricted to what is on Cancer Care Ontario's Drug Formulary list. A list I feel is in serious need of a complete overhaul. Click this for CCO's drug formulary for Hodgkin Lymphoma options. Something that was not included in the Ontario budget put forward today. Now mind you I have to refrain a bit from jumping all over something I don't have all the facts on, I am still reading the Ontario Cancer Plan 2011-2015 Click here. So until I finish that read I will refrain from completely trashing the system. 

So you can see my anxiety when I have two of the big three conglomerates that rule the world somewhat deciding our fate tomorrow the Insurance industry and the Pharmaceutical industry. Ativan has been good to me these past few days! Even so it has been an hour by hour struggle these past couple days to keep my composure.

Tomorrow will come and go for most people out there as just another day. For us, it is going to be one of the most important days of our lives, will it be memorable for the right reasons? Fate will decide that, thus hope and faith from our end is the best we can do to bring this coming day to a memorable close for the right reasons. 

Stay tuned for the follow up. Most likely just a face book mention until we dust ourselves off and I can get to writing a proper blog entry on here.

One heck of a week. But WARNING not for those with weak stomachs!

This week has been a one heck of a week for sure! Started out the beginning of the week researching treatment options for NLPH and found a few things of interest one in particular that stands out, and was passed on to me from our good friend at Patients Against Lymphoma, PAL. I will be presenting and discussing options with my medical oncologist on Wednesday when I see her.

Tuesday, I went out with Brenda and her friend Micky for dinner and a movie. That is where it gets interesting, we went to a local restaurant next to the movie theater for dinner. Once there and we seen the time, it was getting close to our show time, I asked if there was enough time for a burger, the waitress stated sure she could get it out to me in time to eat and make our movie time. During the show, The Adjustment Bureau. I started feeling ill, and by the time we got home I was getting sick to my stomach, and also had diarrhea.

I was only sick to my stomach a few times through the night and in the morning, but the diarrhea continued. By Wednesday early afternoon, Brenda went out and picked up some Imodium with hopes that would do the trick. No such luck, by Thursday afternoon I was on the phone to my oncologists office to see if they could prescribe something for it. My primary nurse called back to say that the Dr. wanted me to go to emerg or a clinic to be evaluated to make sure I was not getting dehydrated and find out what was wrong.

What was wrong was I went to emerg expecting not to wait too long and get evaluated. WRONG! I sat five hours before I finally walked out. After being there three hours they called me in to the triage room, but just for blood, and then sent me back to the waiting room.The waiting room was full with people hacking, coughing, and young children screaming their lungs out for the whole time. Mind you, I was wearing a mask for my own protection. After the blood work they left the shunt in for easy access if needed later.

Well there was no needing it later, five hours was enough, enough of people hacking and coughing, enough of kids screaming, and enough of watching people come in after me and get in and out while I still waited. So I approached the male nurse who had inserted the shunt and asked him to remove it I was leaving, he went to the desk and pulled a paper out of the paper tray. I knew it was a "leave against medical advice waiver" to sign. I told him he could put it right back I was signing nothing and should he not remove the shunt I'd take it out myself. He took it out, and I left ,not happy.

Well this morning I went to my GP's office for 9am when he opens. Surprise! he's not coming in today called in sick. Now what! I then proceeded to the Walk-in clinic next door and seen the Dr there. He was able to get my blood work result from the night before at the hospital, and all was fine with that. He prescribed some strong antibiotics and diarrhea medication, and a stool sample kit to send a stool ( I use that term loosely, literally! ha), to the lab, probably get results Monday, as I came home and went back to bed. So the kit did not get prepared in time to make it to the lab today before they closed. I'll drop it off tomorrow. In the meantime, I finally have be eating without it going directly through me but still feel in a weakened state.

Hopefully tomorrow is a better day.

Change of Direction in My Journey?

Well, I post today with news on my PET scan results. They are not encouraging, however not the worst. The Nodular Lymphocyte Predominate Hodgkin's is back as we already knew. The PET scan showed cancerous activity in both the left and right sides of my neck, as well as the mediastinal area of my chest, under my right arm, and in the abdomen. The activity indicated is early stage.

Right now we are just trying to wrap our heads around all of this. My radiation oncologist is now referring me back to my medical oncologist to look at chemo options for me. Radiation is no longer an option as the cancer is in multiple areas, and chemo options are limited and currently being looked at as a palliative measure. I do not accept this! and am researching options that have a possible curative effect. I will be seeing my medical oncologist in the next week or so to discuss the findings and look at options.

I have a great support team and look forward to hearing any info at all any of you out there can offer about options for multiple relapsed NLPH.  I have had my lifetime limit of Doxorubicin also known as Adriamycin, so any chemotherapy regimens with that in it are out of the question. I will be doing my own research as well as working with my team at the Windsor Regional Cancer Center. I may disagree with my team at the center at times but I still appreciate their care, and work closely with them.

Brenda and I have a lot on our plates right now and all of this is starting to become just too much to handle. I don't know where to turn next at times but I WILL find a way to get us through all of this.The one thing we do have in our favor is that we have a couple of great friends on Facebook, PAL (Patients Against Lymphoma) and family that we help us along the way.
 
So just to recap where I've been on this journey with hopes to find someone out there that has been where I have been here it is:

 1)  Dec. 2006,  diagnosed with squamous cell carcinoma of the left vocal chord. Treated with 25 rounds of   radiation.  

2)  Feb. 2007, diagnosed with T-cell histiocyte rich diffuse large B-cell non-Hodgkin's lymphoma. Treated with 8 cycles of CHOP-R chemotherapy.

3) Feb. 2008 Relapsed with the T-cell histiocyte diffuse large B-cell NHL. Treated this time with 9 cycles of GDP chemotherapy.

4) Dec. 2008 Underwent an Autologous stem cell / bone marrow transplant.

5) Jan. 2010 Diagnosed with stage I Nodular Lymphocyte Predominate Hodgkin's lymphoma. treated with 20 rounds of radiation.

6) Feb 2011 Relapsed with the Nodular Lymphocyte Predominate Hodgkin's lymphoma determined to be stage III after the PET scan I just had. Treatment plan to be discussed and decided at my next visit with my medical oncologist.

We are unsure of my direction right now, so if there is anyone at all out there that might have been through this I am listening. As I mentioned above my chemotherapy options are limited. If you can point me in the direction of something proven to obtain a long term remission please email me. Love and hugs to everyone no matter where you are in your journey. Thank you.
 

PET scan, Pet Peeve!

Well I finally had my PET scan, only 3 years later! What a journey it was to get there too. Friday it snowed here and all the way to London. Knowing the roads might be bad we left 2 hours early. Good thing! Roads had not even been plowed or salted yet. Conditions were treacherous at the least.

We arrived in London for my 11am appointment at 10:55am! That was leaving Windsor at 7am. Upon arrival they took my information and took me in right away. After doing my vitals, testing my sugar, and inserting a line, they took me to a room where the F-FDG isotope was injected. I was then put in a room to relax for one hour while the isotope had a chance to circulate through my body. After an hour, and a nap I must say, I heard a knock on the door, and it was time to go.

I was led to the room with the CT/PET scanner in it and jumped up on the bed and got strapped in. The whole CT/PET procedure once on the table was only twenty minutes. I was told I could sit up once we were done, but to wait while they looked things over. After about ten minutes the technician came back in the room and told me they needed to do another one of just my abdomen area. I had to wait a half hour before they could do it so I waited out in the hall with Brenda.

 When the came to get me for the second time, they told me I could have a coffee afterward so Brenda and her brother Chris, who drove for us by the way, headed off to get me a coffee as it was a bit of a walk to get there. They returned shortly after I had finished with the second scan. Ahhhh coffee! at last! Sure could have used one during the nail biting drive to get there. I was told I could leave and that my oncologist would have the results within  a week.

I must say it was a much better drive home. We headed back to Windsor after lunch in London. The road home was littered with jack knifed trucks and about twenty or so cars, vans, SUV's in the ditch! Once we got back to Windsor it was straight home and to bed for me I was just too wore out.Upon awaking an hour or so later, I had to make a call to the hospital here in Windsor to check on my mother. She was admitted Thursday night with heart trouble. There was no answer in her room when I called, however a short time later my brother had called to tell me she had been taken down to have an angioplasty procedure done and had just returned to her room but was still "out of it".

Sunday, when my brother and I got up to see her we found the she had, had three stints put in one of the arteries to the heart! Might explain why she was tired all the time. She was in good spirits and doing well, and looking forward to going home soon.

After leaving the hospital with my brother we did some running around and then on the way to bring me home a brake line on his Expedition blew! We were able to nurse it to a friend of his and put it in the garage where we found out that indeed it was the left rear brake line. We left the Expedition there he borrowed his friends car to bring me home.

Wow! what a week, our van out of commission and in the garage, t.v. going, takes 12 -15 trys to turn it on! Mom in hospital, rough trip to London. Then to top it all off the elevator in our building breaks down and is out of service from Saturday till today, Monday which meant if I went out for anything it was a six story walk on the stairs. Just to top it off there is nothing more the garage where my van is can do. They can't find the problem which is electrical and most likely tied to the factory alarm which keeps shutting down the van. Dealer wants $130.00 an hour to find it! NOT!  How much more I can handle is in question. I have pretty much gave up on our van at this point. Brenda is handling that right now. So what is next? who knows at this point.

 What I do know is this. PET scan has once again become my pet peeve! You see, a couple of years ago I was on a campaign writing different Government agencies about the tight restrictions put on getting a PET scan in the province of Ontario. At the time I wrote several letters. The agencies I wrote to included, Cancer Care Ontario, the Ontario Hospital Insurance Plan (OHIP), the Ontario Ombudsman, Andre Marin, and Care Imaging. The hoops you have to qualify to jump through to get a PET scan are pretty restrictive, here is the link to PET Scans Ontario and the criteria: https://www.petscansontario.ca/about/

So now that I have my PET out of the way, and awaiting results I will be resuming the letter writing once again with regard to the restrictions on getting a PET scan. After a conversation with one of the technicians working with me in London I have found that most oncologists are reluctant to even order a PET because of all the red tape to get one. The value of a PET has been proven in most every province in Canada with the exception of Ontario. It is also the standard in the U.S.! So lots of writing it will be. Besides with the black cloud that is following me and all that has gone wrong, I need the distraction of writing, which is what this blog is for as well, but I'm on system overload right now.

Get over it?

It's been a long 3 weeks since I heard from my Oncologist and that he wanted to send me for a PET scan. After the initial shock of him even ordering one wore off, the waiting game began.

The usual, stress of waiting for the call with the appointment, was accompanied by the stress of what is going on within while waiting. I know only too well how fast these things may or may not go. Has it spread?, has it gotten any bigger?, are any other areas now involved? Has it metastasized to any organs?

Well not that those questions were stress enough, our van had to develop problems which began Friday night and only got worse. So it is in the shop as I write, I am awaiting it's diagnosis and cost to repair! Been there two days so far and only a guess on the problem. When the mechanic test drove it, it was fine! Fine? Being stuck in the wrong lane during rush hour on a Friday night then again on Saturday, with a vehicle that just "quit" and won't start is NOT FINE. So the jury is still out on that one. 

These worries have become common place for us, and no, you don't get used to them. I guess it should be relatively easy though, because I recently had someone tell me, " your not the only one to ever get cancer, so get over it". Nice huh.  Well, I did not even respond to that as it would have been a complete waste of time. Time I would never get back, therefore time I would much rather spend on more positive things.

I decided to take things into my own hands about worrying over the scan,  and made a phone call to the hospital in London, ON that I was being referred to for the PET scan. I wanted to know what the status of the application to the clinical trial was, as that is what I was referred to in order to get a scan covered by OHIP ( Ontario Hospital Insurance Plan). I was surprised to find out that my application for the trial that was submitted by my Oncologist was rejected. I didn't qualify! Before I had a chance to explode as I was ready to do, the receptionist on the other end of the phone informed me that my Oncologist had already submitted a new request, this time through the Ontario PET Access Program. She also informed me she would call PET Scan Ontario to check on the status of the application for me.

The receptionist, I believe her name was Lindsay, called me back within minutes to inform me that due to the late hour, she got the answering service and promised to follow up in the morning and get back to me on the status of the application. This morning I also contacted my Oncologists office to see what they might have heard about the request if anything, I had to leave a message which I did. Just before lunch time today Lindsay called my from London with the news. My application for the PET scan under the PET Access Program had been accepted and that she had an opening this Friday and would that be OK with me. I told her Friday would be fine and thanked her for everything she had done for me. Shortly thereafter my Oncologists office called back, I informed them London had just called me with the approval to have the scan and my Oncologists nurse confirmed the same as they had just received a copy of the fax confirming it.

So now we move toward the next step of this journey. Once my Oncologist receives the report from the PET scan we will move forward with a treatment plan. A lot is riding on this scan, so the worries are not over just yet. What will it show? Will it be stage 1? or is there more than one area involved, if you remember a post or two back I mentioned that the Gallium scan I had in January did not show activity in the nodes in my chest
(which a biopsy proved wrong) and did show activity in the upper right neck just beside my ear.

Now that I know the Gallium proved to be wrong on the chest nodes, is it, or isn't it, right or wrong about the activity in the neck? Thus the PET and the outcome of the results riding on it! So lots to worry about yet, but then again, I'm "not the only one to get cancer", so I should "get over it" right?

Love and Hugs to everyone in their journey where ever that may be.

Tim, xxx