Sticky Blood-Hughes Syndrome Support
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Hi All! It's been a couple of busy months since I last posted! Think I started my treatment of Lovenox after the 4 surgeries in 6week period! I felt much better on the Shots and my Hemotologist asked if I minded the shots! I said not at all! I have felt better since the shots! The headaches kind of disappeared! I say kind of because they recently returned about 3 weeks ago! My poor Husband was diagnosed with early stage AGRESSIVE BLADDER CANCER! He and his son Keith, my stepson of 37 yrs, have been under care of UROLOGIST for over 2 years and he always told us Prostrate! They both in past 6 month - a year lost lots of weight and sleep a lot! Finally doc checked hubbys bladder with biopsy and went away for over 3 weeks! We got call telling us this, but wasn't going to wait 3 weeks to speak of treatment! My sister Lynn gave me a phone number to Sloan Kettering NYC and I got an appointment 5 days later! The treatment is done only by a UROLOGIST and the chemotherapy is delivers directly to the bladder thru a catheter! He's very lucky to have found it early and very treatable! Although there's always a glitch, 2 days after being dx'd with cancer he ended up in Hosp for 3 days with UTI! I refused to miss Sloan NYC and unfortunately my Hubby Stan needs surgery first to scrape swollen bladder so they can administer the chemotherapy thru catheter and may need scraping of very enlarged prostrate in 2nd operation! Needless to say I'm not taking care of me! Sometimes I 4get if I've taken my shot that day or not and since I don't recall don't chance taking it again! If ur wondering why I don't feel the shot of the day it's because I've had 6 stomach surgeries and don't feel the shots much lol... a lucky thing for me! By missing one shot here and there in past couple of weeks, cud that upset the good feeling and new energy since the shots? Plus my memory problems are still around! I may be a bit sharper, but age and APS has taken its toll on me! I'm continuing in weight loss and no appetite! I'm thinking my nerves have gotten the best of me! I'm up since 3am with migraine and my hubby did get up to make me a cup of coffee with one of my over the counter headache remidies! It worked enough now so I cud write this way to long post! Does anyone have any tips on how I can remember if I tuk my shot? I have a neighbor who reminds me, but even then I forget and am too busy to write it down! I know Lynn and Dave, I think take Fragamin shots? Does this happen to you where u forget? Maybe someone has a certain memory thing that cud remind me! I'm the caretaker of 2 now handicapped adults & im being pulled left to right! I take shots in morning! Thx in advance for any tips or help u give me! I still read and follow the site at least weakly! Love to all and GODSPEED

10 Replies

Hi Debbie

Sorry to hear about your hubby, I do hope his treatment goes well.

Now for you and your shots! If you take them in the morning then you must get it out before you go to sleep the night before so that you see it there before you get up. That way you know that you have not done it. Also if you have a mobile phone, set an alarm on it so that when it goes off it reminds you to take it.

I personally take mine before I go to sleep and keep my shots by the bed. That way I don't forget either. I hope this helps.

Keep your chin up you are doing so well. Thinking of you and your family. xx


Sorry to hear about your hubby Debbie.

As my colleague APsnotFab has said you need a routine to ensure that you take the shots. I do mine every morning on waking.

Dave xx


I wish I cud walk my 3 miles a day again! Just got new leg and they had to make it sooooooo very fast, b4 the 31st of December, they made a $13,000 leg have the use of a penny!!! I can't wear it at all!!! The pain on my skinny femur that I walk on is excruciating! Therefore I now use old leg with opened arms!!! Lol... I'm lucky to have my arms!!! I'll take the blisters that they have no name for and just say ur very unusual! In my years of service, I gota say , I've NEVER SEEN ANYONE ELSE LIKE YOU!!! Lol... shud I feel honored???


Use a permanent marker and mark the packaging with Mon.. Tues.. Wed.. That has helped me.

If no packaging, use an unsealed baggie with day of week. Check with pharmacy that baggie will not somehow damage medicine.

Take care...


Great idea!!! I'll try anything at this point!


Hi Deb,

Sending you a big HUG!

Think of you and your family!



Great news, Lynn has given you great advice, do keep your shots within reach and use reminders as she suggests. Sorry to hear the other news, I hope things improve for you. Great that you feel better on the new medication, it suited me during all my pregnancies. MaryF


Thx seems inadequate to Y'all!!!! Oddly enough APSNOTSOFAB HAS SAME NAME AS MY SISSY LYNN!!! What more can I say, Lure 2 has the Scandinavian CONNECTION AND MOTHER Mary, although I'm not a Catholic as my Britton Dad was!!! Lol....

1 like

May they begin to heal may you have a chance to catch up to yourself also. If you don't have a cell phone set a daily alarm on your computer/iPad to go off daily or as often as you dose once a day or twice a day. Wellness to all, Cindy in NJ


Awe thx I do go in my car only to have my MUCH needed PRIVACY! Thx for ur well wishes!!! There's a GREATER POWER FROM ABOVE THAT I TRULY BELIEVE IN!!! GODSPEED


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