I was told at my appoint on the 13th December that I would need to start chemotherapy in January. Until now I've have been relatively healthy apart from fatigue and drenching. Now I have large lymph nodes in my neck and a really bed chest and throat infection.
My haematology nurse has been really good and said after CT scan and blood test at my appointment everything would be explained to myself. I would really appreciate any advice on what to expect.
Louiej
What treatment regime are you starting?
It's natural to be a bit worried about treatment starting as it's the unknown that we are concerned about but Hey the alternative is not good lol
Give us some info on what treatment and those of us who have been through it will advise.
Geoff
They didn't say, just to have CT SCAN and do a blood test on the day and then tell me what's going to happen. there seems to be many different treatments it's quite daunting. Xx
Have you seen a CLL specialist for a second opinion? All doctors were not created equal.
Jeff
No just my haematology consultant. They did say that they were contacting the hospital in Newcastle to get the treatment I needed xx
Please, please, please make an appointment with a specialist in CLL. It is a proven fact that those that do live longer.
Jeff
Okay thanks will ask when I go in January xx
Can you call now to ask which treatment is planned and what they based their decision on? Have you had a FISH test? It is important to have one done before treatment, as some markers indicate which treatments might not be as effective. If you are getting rituxan as part of the treatment or one of the newer generations of it, it is also important to have a hepatitis B test done as well.
Second opinions are a wise choice, but the reality is they can be very difficult to get outside the U.S. and may delay needed treatment unnecessarily...
Two systems with different access to care...
~chris
No w&w for me. No time to worry. Treatment was what I needed. Never had bad thoughts, just took it with a smile. Remember that a spoon full of sugar helps that medicine go down.
Thank you sounds good th me. I've never let it stop my life and now I'm ready for the treatment and get on with my life xx
Good luck. I was straight into FCR this year and now on GCSF to boost the bone marrow so all good and back on the golf course.
Onwards and upwards
Mike
Have a good Christmas & New Year, so you go into your treatment in a positive way. Good luck to you & I hope it all goes well.
Im imagining its a combinatoin of all the little pionters that mean you need treatment. Im sure your team know what they are doing. You will only allow things to worsen by prolonging treatment. Best to treat the rust before it becomes rot. I know its a worry but it will all fall into place. Prepare to be amazed at how quick you will learn the ropes.
Merry xmas
The bear
The fatigue and bed and nightly pillow drenching is what I was going through before it was discovered by a blood test. Like you, I had swollen nodes on my neck, and big ones under my mandible. I was stage 4 - low reds, and very low platelets.
I wanted to tell you something. Since I was already tired, the first chemo treatment did not give me any side effects to speak of. In fact, after a necessary blood transfusion, I felt like I hit the fountain of youth with the new energy I have again....like a few years ago. I never realized how tired I was, and that it was from the anemia and low reds. I was much more confused and grumpy too. Now after three rounds of FCR, I am joking again and am much happier. I'm less confused too. The chemo treatments are more noticeable each time you do them. My kidneys hurt sometimes, and on chemo days I drink and urinate all night long to get the chemo out. After about a week, I feel like superman with the new energy.
Now, I want to stop chemo early if I am in remission. I am hoping I can stop at 4 cycles of FCR, instead of the recommended 6.
Hi louieJ,
Given so little information regarding the particulars of your CLL and what options you have there is little guidance that online CLL community members can offer. The one feature of your post that is worth examining is when you stated that you are suffering from a really bad chest/throat infection. For a normally healthy person a seasonal infection is not of particular concern. When we have CLL infections can become so frequent as to require IVIG to boost immune function. No matter what treatment you get you will likely experience increased risk for infections no matter what shape your immune system is in. An important category of infectious agents are the viruses and in the case of the Herpes Zoster virus that causes Shingles the infection can be much worse for CLL patients. You can reduce the risk for viral activation doing you harm by having on hand a prescription for an antiviral such as Valacyclovir or Famciclovir. The timeline for quick intervention once a dormant virus is activated is crucial to mitigating the damage that can happen from Shingles or CMV (Cytomegalo Virus) infections. I have never had one of my doctors suggest having an antiviral on hand but I have not ever heard of a valid reason to not allow a patient ready access to an antiviral.
I am on an extended Clinical Trial for a new drug (Ibrutinib) for which we "Lab-Rats" were hastily prescribed Valacyclovir at one gram per day after some patients had viral activation. Shingles can cause blindness and PHN (Post Herpetic Neuralgia) which is a pain that will ruin one's quality of life. At the first sign of blisters is the best time to initiate an antiviral to blunt the attack. At least talk this strategy over with your Doctor because all CLL therapies will further impair your immune function, at least initially.
Best of luck on your treatment path.
WWW
Treatment starting uncertainty
diagnosed in January
Starting Calquence
Starting Treatment Dilemma
