Sometimes life does not go as planned!!

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I am sure that those of you who have followed my blog over the past couple of years will wonder why I have not done an update of my own progress. March 2015 was the two-year anniversary of my Lymph node transfer and I am very happy with the results, not a cure at this stage but a huge improvement. There will be more on this later…

The reason for my lack of posting is I have been very ill with another late stage effect of radiation and cancer treatment. I started to experience weakness in my legs, I had falls, my legs felt numb combined with pins and needles,(peripheral neuropathy) gradually it became harder to get up stairs and to walk in general. December 2013 was my first appointment with a neurologist…. 2014 was a very difficult year, full of doctors appointments many, many tests, scans, a biopsy, neurological tests etc. I was seen by two neurologists, an immunologist and also visited a Clinic that specialized in Functional medicine.( Combining alternative medicine and conventional medicine).By the end Of 2014 I was given the diagnosis of Radiation Induced Lumbar Plexopathy, a very, very rare and untreatable side effect of radiation that leads to paralysis of the legs due to damage to the nerves in the Pelvis. http://emedicine.medscape.com/article/316604-overview#a0101 Women who have had Breast cancer treatment can get Radiation induced Bracheal Plexopathy which leads to weakness or inability to use the arms and hands.

The first three months if this year was spent in hospital, doing intensive neurological rehabilitation, in the hope of regaining the use of my legs. Sadly this did not happen. While in hospital I learnt to use a wheelchair, and everything else I would need to manage with paralysed legs. We have had to sell our house and we will be moving into a home that is wheelchair friendly. Thank goodness for the help of those physios and occupational therapists who got my life back on track while I was in hospital. You can imagine there has been many tears coming to terms with this and I never imagined I could have something healthwise that was worse than the Lymphoedema!!!

It is very hard for me to write this, only 0.16% in 1000 of those who have had pelvic radiation  get this side effect. It can happen from 0-30 years after the radiation. It is difficult to get information and to connect with others but via the internet and the American Cancer Society I have connected with a couple of ladies. This is certainly not something they tell you about when you are having Radiation!!! No I am not starting a new blog at this stage, or trying to build awareness of this side effect!!! All my energy goes to getting through each day and learning to live with my new “normal”.

However even with all this the Lymphoedema journey still continues with I feel good results. Due to my illness I had to withdraw from the research program at Macquarie University Hospital Sydney as I could not have the MRI or Lymphoscintigram done. The measurements would also all be effected due to the muscle wasting of the legs, due to lack of movement. Since the start of the year I have not worn compression stockings, they are difficult to get on and uncomfortable on the sensitive nerves in my legs. Surprisingly my legs have stayed really good without compression. They are soft all the time, a bit of swelling in the ankles goes down over night and I have had no cellulitus since the surgery in March 2013… My lower leg is the same size as my good leg and the thigh a little bigger but does not get worse. Maybe a transfer to the groin as well as the one to the knee would have helped this but there will be no more surgery for me now!!!!

One of the things that is important for Lymphoedema is movement so on the recommendation of the rehabilitation doctor in the hospital I got a MotoMed machine http://abilityinmotion.com.au/products/movement-therapy/motomed/ This has been the best thing I could have done for the Lymphoedema and for my paralysed legs as it keeps the muscles moving and keeps the circulation going. I am unable to peddle, so the motor kicks in and I can do 25km of passive exercise plus I usually do 5km of active exercise, with my arms, for the upper body. This and deep breathing every day helps to keep my Lymphoedema in order, plus I elevate the end of my bed at night to help any swelling. Even the ankle on my good leg swells a bit sitting in a wheelchair all day, so there is double reason to look after my circulation.

I intend to keep this blog going and to share people’s stories and their progress. It has become quite a useful resource for those going ahead with surgery for Lymphoedema. Over the past two years I have noticed an increase in those having LNT and Lymphatic Bypass surgery, LVA, plus Lymph sparing liposuction to help their Lymphoedema, in both arms and legs. I think we are yet to find a 100% cure but there appears to be improvement, how big the improvement depends on the condition of the limb pre surgery and the care given post surgery. It can also take a number if years to see the ultimate response to surgery. Please keep sending me you stories and adding your comments to the posts, it is this sharing of knowledge that helps. Of course non of this replaces the advice of the surgeons who are looking after you, I am also glad to see that some of them are collect data on their results.. This is so important for the future…

Thank you to all of you who have supported me in the past year and who were aware of my problems, you have made it all a little easier to get through. Everyday for me is now a new experience……

If you would like to contact me please send an email to helenbrd@bigpond.net.au

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Elizabeth shares her lead up to Surgery on 19th June

imageThis is the latest update from Elizabeth who will be having surgery with Dr Chang on 19th June… I am sure that we all wish her well and thank her for sharing with us her progress…

“I am beginning my countdown to June 19, 2015 which is my surgical date for a lymph node transplant and the lymphaticovenous bypass with Dr. David Chang at the University of Chicago Medical Center. I initially found out about Dr. Chang from this blog on which I am presently writing. I am so grateful for the support and the commeraderie I have received on this blog-The tears, feelings of hopelessness/helplessness, not to mention the loss of body image was something I had not experienced before. Once I read about Dr. Chang from this blog,(he was originally from the MD Anderson Cancer Center in Houston, Texas) I felt my first rays of hope. For this reason, I vowed that I would share my story so that I could help others–so others will not give up searching for a more permanent solution instead of the countless conservative measures that we Lymphies must endure.
I want to share my experience as I go along so I don’t forget anything.

I went for an evaluation with Dr. Chang in September-a lymphoscintigraphy is a test where dye is injected between the toes to determine where the lymph nodes stop draining. After being told that the drainage in my left leg stopped at my knee, I knew I wanted to have the surgical procedure as soon as I could work everything out with my place of employment. I researched to make sure Dr. Chang was in my network for my health insurance, and Thank God he was as was the surgical procedure.

Dr. Chang emailed his research to me so that I could understand the procedure and what my chances were of getting back to “NORMAL”-All I want is to get my left leg measurements to be similar to my right leg, (which is still normal). The difference in measurement of my left leg to my right leg is about 2 inches bigger in the left thigh, 1 1/2 inches bigger in the left knee and about 2 inches bigger in the left calf. I have been applying wraps, compression garments, bedtime garments, MLD-you name it, I have been the most compliant patient but I really need a more permanent solution—In order for me to put on the Elvarex 1/2 panty 40 mm of mercury compression stocking, I have to sit on the floor with a pair of Playtex purple rubber gloves and pull up this thick stocking even when it is 95 degrees outside. I wear the stocking under my blue jeans as well as under the spandex I wear to the gym. Now finally, even though I know this is a chronic condition and I will always have to wear a compression stocking, I am hoping the amount of compression will decrease after the surgery. Maybe I’ll be able to wear a jobst compression panty hose that has 20-30 mm of mg compression instead of 40 mm. Everyone needs hope-The vascular surgeon here in CT that I confer with occasionally, told me that I should speak on the topic of lymphedema since I have researched this topic so much and feel so passionate about it. While I don’t feel knowledgeable enough or confident enough to talk to a group of people about lymphedema, I would love to help anyone get past the emotional aspect of this chronic disorder. I would love to give this disorder a face-

A short time ago Sandra Lee from the cooking channel told the world that she was having a bilateral mastectomy. My heart goes out to her because everyone who has cancer will have lymph nodes removed. With the removal of lymph nodes, comes the possibility of LE. I will continue to post information so that I may help others who may be thinking about this procedure. Please Pray for me. God is listening.”

Thank you- Elizabeth

We wish you all the very best on the 19th June… Rest and heal after… We look forward to hearing your progress. Take care Helen

Results…

I got this from my doctor today which shows progress in the right direction since my tests last week. Much needed encouragement to keep going even though slow to see results…

1. MRI- showed reduction in your left leg size at the knee level up (left knee now 14% larger than right compared to 29% before) but about the same size in lower calf.
2. lymphoscintigram showed more rapid lymphatic fluid clearance in left leg but still abnormal (your left groin lymph node now lights up at 30 minutes after injection, compared to 50 minutes before the operation).

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Don’t worry ….Be Happy!!!

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I was able to collect my results on Friday but sadly they were in “doctor speak” and I need my doctor to translate them, as to me it is like comparing the good old apples and oranges again, as there is no constant. The constant needs to be my good leg but all those measurements changed too and the Lymphasytagraph this time finished after two hours instead of the four hours of last time!! When I speak to my doctor maybe he will be able to shed more light in the reports provided. I had an MRI which measures levels of fluid in both legs and compares them. The Lymphasytagraph involves an injection between the toes of radioactive fluid which can then be traced as it passes up the legs all the way to the liver. This maps the lymphatics in both legs and shows the time it takes for the  tracer to reach the liver and if there is any pooling or back flow along the way.

The fluid levels in my bad leg may have reduced and maybe the tracers moved faster up my lower leg, but at two hours it shows the fluid collecting in the thigh more than previously. However cutting the Lymphasytagraph by two hours does not then show if it clears. Pre surgery the fluid collected in my calf and was still there after four hours. My feeling is that at this stage there has been no miracle cure!!! I do feel my lower leg responds better and clears overnight, but as this is a two-year project we will give it time and see what the next six months will bring. I am not going to worry about this, as I cannot change the outcome. Either things will get better or they will stay as they are now, nothing else I can do but look after my leg. I will continue with my therapy and try to remain positive…yes there will be some dark moments when I wonder if I should have gone ahead with this surgery, but I can only move forward not back.

In the mean time this is a very exciting month as my daughter gets married on 28th September. There are lots of visitors, including my son who will arrive from Denmark with his girlfriend. I have much to look forward to, so this month will be wedding month… Here comes the bride and groom……very exciting.

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LRF Holds First-Ever Live Streamed Symposium

LRF Holds First-Ever Live Streamed Symposium.

Although this video is long it has a great deal of very good information about Lymph Node Transfers/ Transplants that I am sure will help anyone looking into this… Also LRF and what they are achieving… Thanks Lymphatic Research Foundation

Please click on link to view.

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Sydney Harbour.. My home city.. Photo Helensamia

Patience is a Virtue

Sitting in a hospital room, however nice, does not fuel ones writing juices and “fodder” for my blog has dried up a little being so confined!! The only source of gossip and stories are the nurses chattering at the nursing station outside my room, which on occasions sounds like a party, it goes into overdrive at change of shift time when everyone meets and greets those arriving. There is great excitement when news of holidays, babies, moving, children and the joys of life and time away from the hospital are shared. One night there was great concern, as a patient had lost her name tags and could not be identified, as she was unable to speak, she was needing a dose of morphine which could not be given with out accurate identity. In the end the nursing home that she came from had to fax a picture for ID! A couple of nights later a doctor came to replace yet another canular and threw my name tag in the rubbish, as it had been in the way!! I asked the nurse to replace it, “Before you forget who I am!” Every drug that is given is preceded by giving your name and date of birth, every single time, even though I have always been in the same room. I said I needed a recording to press each time, especially in the middle of the night! I guess that is better than getting the wrong drug.

The doctor came yesterday and I hope to go home on Friday continuing to take oral antibiotics. There is concern as to how this infection has impacted on the transplant and the ability of the new nodes to create lymphatic vessels. However this is not something which will be known immediately as it was always going to be a slow process. In six months I am to have another MRI and a Lymphoscintigraph to map the lymphatics and their progress. Prior to that I believe it is a case of monitoring the lymphoedema to see if there is improvement. It is very hard to tell at this stage what is swelling from surgery and what is lymphoedema, also the fact I cannot bend leg or move too much does not allow lymph to disperse. I cannot wear compression garments over the transplant at this stage but have ordered knee highs to see if they help. Although I knew before surgery that things would be slow and results would not be seen immediately, I was not really ready for the reality of this and how it would feel. I am reminded of the saying, “Patience is a virtue!”

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Some of my lovely flowers.. Photo Helensamia