Hi I am Jim and I have None-Hodgkin’s Lymphoma, boy way to start a new journey in life, but I am upbeat and determined to make the best of the situation and go on living.
Now this might be interesting to some, but while I am a patient and going through R-CHOP, I am also a Physician, so now I know what it is like on the other side of the fence.
With that said and done, I finished my first session last week, with wonder-drug R and yes I did have a small initial reaction to it. I got the shakes and shivers for only a few minutes (controlled with Demerol, fun stuff). Rest ot the session went by well, including the CHOP portion.
Initial impressions.. WOW mind you I am stage IVB with Indolent B-cell Follicular that seems to have radicalized and spread all over my body. Within 8 hours of R infusion tumors reduced to half their size, and while taste seems to have been affected I still felt quite well. Stayed at MD Anderson for two days, Oncologist wanted to observe reaction and monitor Potassium levels.
Today marks a week since first treatment blood works looks good and clinical team has been taken back.
by the tumor lysis. My taste is still somewhat blah but improving and still have occasional nausea, I have lost close to 10 lbs of tumor weight my neck lost a thirds of it's size and my wife tells me I look younger and fit (go figure and she is jealous).
Honestly food is no longer a turn on, but I am forcing myself to eat a normal diet and maintain normal activity,
Next treatment will be in about 1.5 weeks and I am looking forward to it. BTW still waiting for hair loss (I have always wondered how I would look bald and hairless [Yul Brainer move over], but this should be soon).
Honestly, there is so much to do, so much to see, and so much to live for I just can’t afford to dwell on negatives.
To me Lymphoma has become just one more bump in the road of life; you address it and move on.
Any suggestions to make the voyage better?
Also. if I can be af any assistance please let me know.
Regards to all
Message was edited by: jgold
So you've had to wait so long for a response, the discussion board had some technical issues so new posts weren't showing up for some of us, maybe all of us.
Welcome to the board or the big old country kitchen that some of us like to call it. Or, the Reluctant Members Club. LOL
Sounds like your voyage is well under way and you've packed a good attitude for the trip. That'll take you far in this journey. The one suggestion or thought I have is that when you receive the Adriamycin (red stuff) have the nurse get you some ice chips to suck on. Yup, ice chips. Maybe they gave them to you during your first infusion. If not, I had them and apparently it helps to ward off or reduce any mouth sores you might get from the treatment. I got wonky taste buds but no mouth sores whatsoever during treatment. The other thing I did was keep my mouth really clean too. I brushed after eating anything and rinsed well.
The main thing is listen to your body, rest when needed, continue to eat and eat well, drink plenty of good fluids. Extra protein is helpful in your diet as well as your muscles do take a hit with R-CHOP. If meat and the such don't sound good, a smoothie with fresh or frozen fruit, ice cream or yogurt and protein powder can help.
By now, you probably have some hair loss and it will definitely be gone just before or after the next treatment. Even as a woman, I found it liberating. No shaving, I still used a good shampoo on my head, and no having to style and dry my hair. Saved a bunch of time getting ready for anything. lol
Come as often as you need and want and post, vent, ask questions. We're here to take this voyage with you. Can I get you some coffee, tea and/or cookie fresh from the kitchen?
Hi Jim...what struck me from the get-go in reading your post is that you already have a unique and useful "tool" in facing and dealing with this blasted disease that kidnapped our bodies, taking up residence without so much as a ransom note. That is, in my humble opinion, your attitude/humor. The food issues (eeeww, what happened to this pizza) and hair loss (I'm sure Yul Brenner will be jealous) are fairly common, although I must admit I didn't deal with the hair loss well, thought for sure it wouldn't get me, kept a couple of strands in the back, threw on a hat and figured who would know?? Anybody who wasn't legally blind, that's who. I did, however, finally figure out that having Immodium and Phillips Milk of Magnesia on hand was a godsend. Whichever direction my body decided to go, I gave it a directional arrow to pay attention to.
That and the anti nausea meds (which I never took) were always at the ready.
If I may ask, what type of physician are you?? Gosh, now I can't say in any of my posts "none of us are doctors!" Wishing you the very best outcome until you see this "bump" disappearing in your rearview. Come and chat, complain, share, pick your poison. We look forward to hearing from you.
Welcom to the group,
Monitoring potassium, don't remember that that was a specific concern, will have to ck. Is this to identify early any turmor lysis syndrome ? as, you rapid response might trigger thata concern, though you didn't mention if any nodes were considred bulky, or kidney dysfuction?
I think it was Jane who mentioned softwre problems?
Taste goes pretty quick and they recommend staying away from one's favorite foods in order to avoid spoiling them for future consumption.
Hello, and sorry for the delayed responce. Thank you for the warm welcome, it is nice to meet people that understand what you are going through.
Well I am getting ready for the 2nd session this coming Wednesday, I am sure it will go by well without any incidents, in the mean time I had to have three Neupogen injections this weekend to build up white count. First administration, reactionwas minimal with a slight headache, 2nd administration I felt as though my lower back was placed in a vice-grip, but I went ahead with planned weekend activities and attended the Galveston Grand Opera showing of "My Mother is Italian, My Father is Jewish and I am still in therapy". Had a great time even though sitting still was slightly uncomfortable. Yesterday, Sunday I had the third Neupogen injection and I only had a slightly stiff neck, also decided to shave off my hair as it was already falling out in clumps (Yul Brainer you have found your match... so said my wife, but she has a bias in my favor). We also went to the Pasadena Little Theater (Life has to continue).
Tomorrow I visit the Oncologist take blood test to verify that white blood count has risen and off to the next round of Chemo on the following day.
To respond to questions asked before.. I am an ex- anesthesiologist (Gas Pusher or Passer) that decided to expand my knowledge and went back to get a Masters in Public Health (Community Health) and finally a Doctorate in Public Health (Disease Control or better knownas a bacteria chaser). I worked for the County Health Department for 13 years and now I am working for the Adult Probation Department as Director of Research and Clinical Services trying to help implement Evidence Based Practice and data analysis.
As for lysis... yes a had bulky tumors on neck, thorax and abdominal cavity which were of concern. To date I have lost 10 lbs of tumor weight. My taste has returned but surly it will go south once more after the next session has finished. I am also hopeful that the next session will be less dramatic and will sail through it as well or even better than the first one and remaining tumors will either shrink further or disappear once and for all.
In the mean time I continue and will continue to feel as good, even if some pain is thrown my way.
Will report back soon after the next Chemo infusion.
Good Luck Jim! Glad to hear you are hanging in there. It is quite a journey. I remember back to my time on RCHOP (which was 4 years ago!), and I had no taste for any foods. I ate a lot of milkshakes and smoothies with protein powder as Jane suggested. And stuff like mashed potatoes and mac n cheese. Just eat what tastes good to you. That is good that you and your wife are still getting out. I think early on I still tried to get out, but as I got into my treatment I did feel that it got cumulatively harder and I didn't get out as much later on. Plus it was about the same time as you are going through your treatment during flu season! I will be in remission 4 years in November and just had a healthy baby boy! Stay strong and get lots of rest! Drink gatorade and other fluids too to stay realy hydrated.
Well, Just got back from MD Anderson and I have a green light for next chemo session starting tomorrow morning.
Dr. is please with the progress, but not happy with how my white bllod count as it took a dive after chemo. Nonetheless the Neupogen brought everything back up and I am ago.
Tenty Four hours after chemo I will have a Neulasta injection (on Thursday) and wait three weeks for the next session. By then I will be 50% through treatments and on the way to recovery (Remission).
Life is still grand and getting better.... BTW taste buds waiting to take a hit so milshakes, peanutbutter smoothies and Boost are ready tohelp me over the 5 day Prednisone rush (also Tabasco sauce is helping food taste a bit better (maybe I should buy stock in it).
Then back to some type of normality for another 2 weeks and then we start over again.
Thanks for all the well wishes froma new Hairless friend....(wife said I look more like Telly Savalas, even hairdresser gave me a lollypop after she shaved my hair off).
One more issue of concern;
How does one help our spouses/partners cope with this disease, while they might not feel the physical pain they are feeling the emotional pain. I want to be there to support my wife, while she is there trying to support me. Which in its self must be horrendously hard on her.
Jim, from personal experience (mine...I'm sure everyone differs) I started out not talking/sharing much info with my husband. I so didn't want him to worry or stress, wanted to keep it as light as possible around him. My only accomplishment in traveling that path was to make him worry more and try and hide it from me. I truly believe husbands and wives have an intuitive "knowing deep within", having developed insight/instinct as our partner, be it two years or twenty. Being free to support each other without pretense is completely liberating and this journey/path with it's twists and turns is certainly not one any of us would choose. We can, however, choose to lighten the load wherever we can, and this might be one of the ways to think about.
Keep your Tabasco well stocked and a glass bowl full of lollipops handy!!!!
After your session tomorrow, as you say, you're 50% done, starting on the downslope and on to new adventures.
I too have been recentlyn diagnosed and will be starting on RCHOP. I am a retired nurse and as one I have a question for you. You being a doctor and knowing the effect chemo can have on you have you ever considered or researched alternative treatments? Such as Cancer being a Fungi? Or some of the other things they have out there? I am just curious and am asking your opinion...Thank You Lori
At this point in time and due to my stage4 status I choose chemo and I know very well the risk of that desicion, but right now I have a new lease on life and will enjoy as long as possible. After remission I will try anything within reason that might prolong and enhace my immune system and quality of life.
I personally think that we are always developing cancer cells throughout our life time and our system in most cases takes care of them.
What I truly believe is that our abilities to destroy cancer cells are compromised a result of our life styles. Now let me clarify this statement, all of us as results of living at this time period are subjected to many environmental hazards on a daily basis. Just look at the chemicals you use at home, from cleaning fluids, to detergents, just read the information provided and it will send a shiver down your spine.... even more when reading the warning on gardening pesticide and fertilizers. BTW also look at the preservatives used in the food processing industry and hormones used to fatten poultry and cattle for human consumption, and if that does not get you the pollution of our rivers/water systems and clean breathing air will.
Many years ago they had many cases of breathing disorders and found out that the insulation used in many homes in the northern part of the USA had UREA/formaldehyde as part of the chemicals used.
Another example is asbestos and the formation of mesothelioma.
This is only the tip of the iceberg (sorry you got me going here). We as consumers are very and I mean very naive, the substances we are exposed to are not innocuous and will build up in our systems overtime. In some good folks, we develop cancers; in other we develop other system wide chronic health issues with dire consequences.
Over the course of time the number of cancer cases has not decreased contrary they have continued to rise (now this can be the result of better diagnosis and survival as a result of better medications, but read the fine print on cancer treatment. You can cure??? one kind of cancer but you potentially place the patient in a position of developing another type.
Also there is at least one cancer that can be have a direct link to a virus called Epstein Barr (Mononucleosis) and it is the one you and I have.
Well after this rant... the conclusion you will come to is that any agent can be blamed for the formation of a cancer, but I truly believe that the most effective part of a treatment is the attitude you have and the love to life you show. The chemo-therapy can do so much, but it is up to you to do the rest.
As many will tell you the response to R-CHOP is sort of individual, most have a slight reaction the Rutixan, the other medications are a piece of cake. But I had a good outcome and minimal reaction and returned to work within a day or two and feeling better than I have in years.
The slow growth of NHL takes your health slowly and gradually so you do not realize how bad you were feeling, Four days after the first session I was feeling better than I had for the last three to four years, and if this sound absurd I am actually looking forward to my next session tomorrow.
Hope this helps a bit, good luck and if you need someone to talk to send me a private message and I will try to contact you. If you are in the Houston Area I will be more than happy to meet you at MD Anderson and chat for a while.
Again good luck and as other have told me.. Welcome to the group, and please, please be positive and have humor become part of the life style change.
Well round 2 is behind the belt. R-CHOP went well no side effects to Rituxan (Administration of R-CHOP took about 7 hours). A little tired with a slight headache, but doing OK I suppose as I am back at work. Tomorrow will have to go and get a shot of Neulasta... fun fun... but rather do it than face the alternative.
Hair loss continues... yes I have the Telly Savalas (including the lollypop) look (just could not make the Yul Brainer look not quite as dashing) and mustache is gone.... Honestly, I look more like my maternal Grandfather oh the joy. Hair please grow back soon. At least my wife seems to be adjusting the her “new” love interest well, but she continues to come by to rub my head and take a second look at me.
Well that’s all for the time being, hope all of you have a safe and healthy weekend.
WOOHOO!!!!! 2nd round behind ya and a couple weeks reprieve!!!! And Jim, oh my, do I remember vividly the hair loss issue....think about the third week in and I could no longer deny the blatently obvious, had a wee to mid-sized psychotc break the good news is it does grow back!!!!
Enjoy your time off and this wonderful fall weather!!